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 HIGHLIGHT
NCCS Meets with Senate Offices to Share Serious Concerns Regarding New CMS Waiver Guidance
This week, NCCS and other organizations in the Cancer Leadership Council participated in meetings with Senate offices to discuss the Centers for Medicare and Medicaid Services’ (CMS) recent waiver guidance. This guidance would permit states to pursue waivers that would undermine the Affordable Care Act (ACA) and its patient protections. As we reported last week, these waiver concepts are layered on guidance that made dramatic changes to the ACA’s “guardrails,” which are key requirements and standards for health coverage under the law.
In the meetings with Senate offices, NCCS articulated the impact that these changes could have on cancer patients if states pursue these waivers. For example, the waiver guidance would allow states to use ACA subsidies to pay for short-term, limited duration plans, considered to be "junk plans" by many experts. Many of these plans do not cover necessary treatments if individuals are newly diagnosed with cancer. The use of these plans would also bifurcate the ACA marketplace and raise premiums for those with current marketplace plans. NCCS also urged Senate offices to consider a bipartisan agreement aimed at reducing ACA premiums and stabilizing the market.
This Hill article helps clearly outline what has and hasn’t changed over the past year in the health care marketplace, especially when it comes to short-term plans.
Read the full statement from NCCS about the waiver concepts »
CHART OF THE WEEK
Multinational Comparisons of Health Systems Data, 2018
by The Commonwealth Fund
This chart once again shows the stark contrast of how much the United States has spent on health care over the past forty years compared to other industrialized nations. Despite this massive discrepancy, many would argue that the return on investment for patient outcomes continues to be very concerning.
IMPORTANT READS
The poor state of U.S. hospital quality
Axios
Despite spending $3.5 trillion on health care in 2017, this Axios article provides a succinct overview of how health care continues to fall short in this country, especially when it comes to the nation’s hospitals.
We have a new worst-case scenario for Obamacare
Vox.com
We have mentioned in several recent Health Care Roundups about the numerous waivers being put forth by the Trump administration that states can use to sidestep the Affordable Care Act. This article walks us through what it would look like for patients in states who do adopt some of these waiver policies. Spoiler alert: prices would likely go way up for those staying in the ACA marketplaces, with most of them likely having pre-existing conditions.
If you’re single with cancer, you may get less aggressive treatment than a married person
The Washington Post
An interesting article that looks at the stereotypes and biases of providers and researchers that can impact the treatment of patients who are married vs. single.
How Robin Bush's death strengthened George and Barbara's marriage
The Houston Chronicle
Former President George H. W. Bush and Barbara Bush lost their daughter, Robin, to leukemia in 1953, when she was three years old. The article discusses how such a loss impacted them for the rest of their lives, and their relationship. Such a tragic loss was also a motivating factor that led both Pres. and Mrs. Bush to be life-long cancer advocates, raising money for research and serving in various volunteer capacities at MD Anderson in Houston, Texas.
Related Posts
NCCS Strongly Objects to New CMS Waiver Options That Seek to Further Undermine the ACA
Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
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HEALTH CARE HIGHLIGHT
CMS Issues New Waiver Options to Undermine the Affordable Care Act
This week, the Centers for Medicare and Medicaid Services (CMS) released four new waiver concepts that would allow states to pursue alternatives to the ACA. This announcement follows recent CMS guidance that outlined broad authority to the states to design their health care systems through a waiver of key ACA requirements and provides states with more specific options for avoiding ACA standards.
The four concepts would allow states to:
- Redirect ACA subsidies to personal accounts
- Design their own subsidy program that deviates from the current ACA standards
- Direct ACA subsidies to purchase non-ACA compliant plans such as junk plans, or catastrophic plans
- Use waiver money to support risk stabilization through reinsurance or high-risk pools
This waiver guidance could have serious implications for people with cancer as it would encourage states to design systems that would deprive cancer patients of adequate and affordable insurance options. If junk plans become eligible for ACA subsidies, then ACA-compliant plans that include critical patient protections such as pre-existing conditions protections and essential health benefits would become unaffordable for many. By directing federal assistance to junk and other skimpy insurance plans, CMS is encouraging states to provide insurance options that will largely be inadequate for anyone newly diagnosed with cancer who need comprehensive insurance coverage.
NCCS will express its strenuous objections to the waiver guidance during the open comment period, even though the Trump Administration has made clear that it is moving ahead with the waiver plan even before the comment period ends. NCCS will collaborate with other organizations representing the needs of patients in efforts to block this most recent effort to undermine the ACA and the people with pre-existing conditions who are served by the ACA.
Read more about the implications in this Health Affairs article »
Read the full statement from NCCS about the waiver concepts »
CHART OF THE WEEK
KFF Tracking Poll – November 2018: Priorities for New Congress and the Future of the ACA and Medicaid Expansion
by Kaiser Family Foundation
The November Kaiser Family Foundation tracking poll contains a lot of interesting information. One example is the chart below, which shows that despite the fact that Congress repealed the penalty for not having health insurance last year, only 31% of respondents knew it.
IMPORTANT READS
ACA Sign-ups still trailing in fourth week of open enrollment
Modern Healthcare
(Free registration may be required to view article)
More than 2.4 million people signed up for coverage through HealthCare.gov in the first four weeks of the Affordable Care Act's sixth open enrollment, about 350,000 fewer than during the same period last year. While insurance exchange premiums for 2019 coverage are lower for many people across the nation, the absence of the individual mandate penalty next year and expanded availability of alternative coverage could be contributing to the slow-down in enrollment.
Is Trump Pushing Health Insurance Innovation Or An ACA Rollback?
Kaiser Health News
In announcing additional flexibility for states, CMS Administrator Verma stated that the ACA’s requirements were impossible for states to meet and said, “I’m confident states will come up with ideas that will work better.” Administrator Verma says that pre-existing conditions protections remain, but health policy experts point to concerns about bifurcating the insurance marketplace, raising rates for people with health needs who need more comprehensive coverage.
Medical devices for pain, other conditions have caused more than 80,000 deaths since 2008
STAT News
An investigation found significant patient harm, including more than 80,000 deaths, from medical devices. The report notes that with its medical device approval process, the Food and Drug Administration “puts people at risk by pushing devices through an abbreviated approval process, then responds slowly when it comes to forcing companies to correct sometimes life-threatening products.” The day after the investigation was published, the FDA announced plans to overhaul the medical device review and approval system.
Combating Cancer: How AI Will Revolutionize Healthcare
Fortune
Simone Song, a senior partner at venture capital firm Ori Healthcare, tells Fortune’s Global Tech Forum that she invests primarily in biotech firms dedicated to tackling cancer, particularly enterprises with an AI-focus.
Related Posts
NCCS Strongly Objects to New CMS Waiver Options That Seek to Further Undermine the ACA
Health Care Roundup: With the Midterms Behind Us, What’s Next For Health Care?
Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
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HEALTH CARE HIGHLIGHTS
What the Midterm Elections Mean for Health Care
Technically, the midterm elections are behind us. However, with nearly 60 new Representatives ready to join Congress, NCCS continues to analyze the results and identify what opportunities and challenges may lie ahead for cancer care.
To start, with the House now in Democratic control, the threat of legislative repeal of the Affordable Care Act (ACA) is likely off the table after two years of repeated attempts to gut the law. At a news conference this week, Senate Majority Leader Mitch McConnell rejected the possibility that Obamacare repeal will return to the legislative agenda, saying it is "very obvious" the Democrats would not be interested in repealing the law. He said Congress will now turn toward finding bipartisan solutions on the rising cost of prescription drugs.
However, while legislative repeal of the ACA is now unlikely, we anticipate continued attempts to chip away at the ACA through the regulatory process. As we reported just last week, the administration released new guidance that would allow states to sell junk insurance plans and permit ACA subsidies to pay for these plans. All indications point to the fact that the Department of Health and Human Services (HHS) will be lenient in approving state waivers to further weaken and reduce access and affordability to patients in certain states.
Another result of the midterm elections was the expansion of Medicaid in Utah, Idaho, and Nebraska, giving health coverage to 325,000 people and bringing the total number of states to expand under the ACA to 37. Democrat Janet Mills won the governor’s seat in Maine, where Medicaid expansion passed on a ballot measure in 2017, only to be stalled because the current governor flatly refused to approve implementation. So that state is also expected to expand Medicaid.
Speaking of regulatory policy, this week HHS Secretary Alex Azar announced that the Centers for Medicare and Medicaid Services (CMS) plans to release a new mandatory Medicare payment model for cancer patients. The model will focus on radiation oncology, but no other details are known at this time. NCCS will continue to monitor this and keep you updated as the model rolls out.
CHART OF THE WEEK
Midterm exit polls: Health care is top issue for voters
NBC News
Exit polls on Tuesday showed that health care was the most important issue to voters in the midterm elections.
IMPORTANT READS
Midterms put the brakes on Republicans’ health care agenda—so what’s next?
MarketWatch
We saw candidates on both sides of the aisle campaign on protecting pre-existing conditions because health care and the ACA came in as the number one issue for voters in this election. Now that Democrats have control of the House, the ACA is no longer at threat of repeal by Congress.
The new health care agenda: gridlock, lots of hearings
Axios
Axios provides a great overview of the election results and their impact on health care. In addition, they make predictions for the new Congress including a heavy dose of health care investigations and hearings, focused on regulations and waivers that undermine the ACA and Medicaid.
Open enrollment is underway—here’s what consumers should know
Kaiser Family Foundation
Now that short-term health insurance policies, or junk plans, are available for consumers, it is important to know that these plans are not ACA-compliant and do not cover pre-existing conditions, essential health benefits, or other important patient protections. Kaiser Family Foundation shares a fact sheet on these short-term plans.
Related Posts
Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
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HEALTH CARE HIGHLIGHT
Open Enrollment for ACA Now Underway
Open enrollment for 2019 ACA plans began yesterday and will run through December 15, 2018. Despite numerous attempts to repeal the ACA in 2017 and an ongoing court case in Texas, the ACA continues ahead, business as usual, for the most part. Many Americans will qualify for financial help that lowers their monthly premiums to between $50 and $100. Tara Siegel Bernard reports in the New York Times:
Premium prices could be even lower this year, had it not been for administrative and congressional actions nullifying the individual mandate and promoting short-term and association-based health plans. A Kaiser Family Foundation analysis highlighted:
Regardless of the policy or political implications, the bottom line is that cancer patients and survivors rely on access to quality and affordable health care. Right now, that coverage is accessible for many, if not most, through the Affordable Care Act. It is imperative that people sign up for coverage at healthcare.gov BEFORE December 15.
Additional Information:
- Why Do Short-Term Health Insurance Plans Have Lower Premiums Than Plans That Comply with the ACA?
- For Business Owners Mulling Association Health Plans: If the Prices Look Too Good To Be True, They May Be
CHART OF THE WEEK
ACA’s Pre-Existing Condition Protections Find Bipartisan Support Ahead of Midterms
Morning Consult
This chart is quite revealing in the context of the Texas lawsuit to block the ACA and repeated Congressional attempts to repeal the ACA.
83% of Democrats, 80% of GOP voters say insurers should have to cover people with pre-existing conditions: https://t.co/UeeudrVYpv pic.twitter.com/9bQn6Mp8O4
— Morning Consult (@MorningConsult) September 15, 2018
IMPORTANT READS
Survivors of Head and Neck Cancers Have an Elevated Risk for Suicide
AJMC.com
A recent study published in Cancer highlights the difficult survivorship issues thousands of patients with head and neck cancer must face. The authors highlight that these severe challenges cause HNC survivors to be “twice as likely to die by suicide that survivors of other cancers.” These are sobering statistics that will hopefully lead to more interventions and support services for HNC patients and survivors.
Fear of Cancer Recurrence Webinar
NCCS
NCCS hosted recently a webinar entitled, “Understanding Fear of Cancer Recurrence.” Dr. Sarah Reed, MSW, MPH, PhD, at University of California, Davis, shared her insights and research on fear of recurrence and offered tips and strategies to help reduce the intense anxiety.
NCCS Webinar Video: “Understanding Fear of Cancer Recurrence”
Studies Warn Against Minimally Invasive Surgery for Cervical Cancer
New York Times
Two new studies published in the New England Journal of Medicine are the first to provide insights into minimally invasive surgery versus an open abdominal operation for cervical cancer. Researchers found that minimally invasive surgery “was more likely to result in recurrence of the cancer and death.” The article highlights that the results are already changing medical practice, quoting a doctor at M.D. Anderson saying they’ve stopped doing minimally invasive procedures for cervical cancer.
4 in 10 Believe Alternative Therapies Cure Cancer
WebMD
In the American Society of Clinical Oncology’s National Cancer Opinion Survey, 38 percent of respondents said they believe alternative therapies alone can cure cancer, despite evidence of higher mortality rates for people who use alternative therapies in lieu of standard cancer treatments.
Related Posts
Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
Subscribe to our email list and receive these updates in your email box each week »
HEALTH CARE HIGHLIGHTS
A Week of Proposals and New Regulations
This week, there were several regulations and proposals announced by the Trump Administration that would impact health care in the U.S.
The announcement that made the biggest splash was revealed yesterday and would require drugs administered by physicians and paid for by Medicare, known as Part B drugs, to be priced based on the prices paid in other advanced industrial nations. The proposal announcement came hours after a report was released by HHS that compares prices charged by drug companies in the U.S. with prices they charge in other countries. “Overall, prices and reimbursement rates for Part B drugs are significantly higher for U.S. providers than purchasers outside the U.S,” the report said. NCCS is analyzing the proposal to understand how it would affect patients’ out-of-pocket expenses and access to care.
Aspects of the proposal were drawn from a similar Obama-era proposal and it comes less than a week after another drug pricing proposal was announced that would require drug makers to include the price of drugs in direct-to-consumer (DTC) television advertisements. Read NCCS’ statement on the DTC advertising proposal here.
(Click to view full-size)
New CMS Guidance Threatens Pre-Existing Condition Protections
On Tuesday, CMS released new guidance that significantly alters the standards that states must meet in order to be granted a waiver from certain Affordable Care Act (ACA) requirements. The Trump administration would permit states to revise the rules of their health insurance markets significantly, including to authorize the use of ACA premium subsidies for short-term insurance plans and association health plans that do not meet ACA benefit standards.
Although the administration maintains that the guidance will still require states to adhere to the guardrails of the ACA that relate to comprehensiveness of coverage, affordability of coverage, and the number of individuals insured, in practice the guidance will bifurcate the insurance markets and deny people with pre-existing conditions access to affordable and adequate insurance options. Healthier Americans will likely choose less expensive insurance options, including short-term plans and association health plans, especially if they can use premium subsidies for their purchase.
Cancer patients will be especially hard-hit if they are left in an insurance market that includes only older and sicker consumers. In response, NCCS joined more than 25 patient and consumer groups in a statement urging CMS to withdraw this guidance.
IMPORTANT READS
High price of precision medicine forces cancer patients to make agonizing choices
USA Today
We find ourselves in the early stages of new cancer treatments, including precision medicine and immunotherapies. While these new treatments offer hope to many patients, being on the frontline of innovation certainly comes with risks, including physical and financial. This article highlights the difficult choices patients must make, especially now until these new treatments are adopted by insurance companies as standard treatment.
“Precision medicine is one of the most celebrated areas in cancer research. But the high cost of cutting-edge tests and treatments is threatening to keep it out of reach for many patients.”
In Days Of Data Galore, Patients Have Trouble Getting Own Medical Records
Kaiser Health News
This article is a great reminder that patients have the right to obtain their own medical records. However, despite the law, it continues to be difficult for patients as the study in the article highlights. This is particularly relevant for cancer patients, who need access to their medical records to obtain second opinions and are often tasked with coordinating their own care.
Trump's drug plan falls flat in health care messaging war
By Dan Diamond, Politico
In races across the country, Democrats continue to focus on health care. As the article points out, “Democrats had an 18 point advantage among voters on health care compared to Republicans, according to a Washington Post/ABC News poll.”
“President Donald Trump tried Thursday to make good on a campaign vow to lower drug prices — attacking ‘foreign freeloaders’ and proposing significant changes to how Medicare pays for many drugs. But his populist proposal didn’t appear likely to budge the national debate around health care, just days ahead of the midterm elections.”
The Role Health Is and Is Not Playing in the Midterms
By Drew Altman, Kaiser Family Foundation
While health care is getting a lot of attention leading up to midterms, it is not a single issue voters base their decisions on generally speaking.
That said, the article points out what is at stake concerning health care policy moving forward depending on the results of these elections.
Related Posts
Rule Will Likely Result in Comprehensive Coverage Becoming Unaffordable for Patients; Leave Many Uncovered
Washington, D.C., October 26, 2018— U.S. District Court Judge Richard J. Leon is expected to hear oral arguments today in Washington, D.C., from groups challenging a rule implementing changes to short-term, limited-duration (STLD) insurance plans. The hearing in the case Association for Community Affiliated Plans v. United States Department of Treasury will allow the plaintiffs to explain the devastating impact patients could face under the rule if bare-bones plans that do not comply with patient protections required by the Affordable Care Act are permitted to be sold on the individual insurance market for up to 36 months.
Patient groups representing millions of Americans with serious health conditions filed an amicus curiae (or friend-of-the-court) brief on October 8 in the case. Those groups include the American Cancer Society, American Cancer Society Cancer Action Network, American Heart Association, American Lung Association, Cystic Fibrosis Foundation, Epilepsy Foundation, Global Healthy Living Foundation, Hemophilia Federation of America, The Leukemia & Lymphoma Society, March of Dimes, National Coalition for Cancer Survivorship and National Multiple Sclerosis Society.
A joint statement from the groups follows:
“The rule effectively allows short-term limited-duration (STLD) plans to serve as replacements for comprehensive coverage in violation of current law. Allowing these plans to exist in contradiction to their intended use as stated in their name—‘short-term’—could siphon off younger and healthier consumers and destabilize the insurance market. Those who need comprehensive coverage will be forced to pay drastically higher premiums or go without insurance.
“Splitting the market will drive costs up for those with serious illnesses including cancer, heart disease and lung disease who need coverage that includes recommended prevention, treatment and follow-up care. The very population the law is designed to protect could again face barriers to quality health coverage at a cost they can afford—a common occurrence before the law was passed that kept many patients from getting critical care.
“The evidence is clear that individuals who are uninsured and underinsured are diagnosed later and face poorer outcomes. Many individuals with short-term, limited-duration insurance who become sick will again be unable to afford the care needed to respond to a life-threatening or life-changing diagnosis, and will be forced to delay treatment for the months it may take to secure adequate coverage.
“Because of the overwhelming risks to patients and the proven flaws with these plans, we urge the court to issue an injunction immediately stopping the rule and preserving current limits on STLD plans.”
To read the full amicus brief filed by the public health groups, visit: https://bit.ly/2OPxz9k.
Related Posts
NCCS Concerned About New CMS Guidance on 1332 Waiver Process
Silver Spring, MD – The National Coalition for Cancer Survivorship (NCCS) is extremely concerned by the Centers for Medicare and Medicaid Services’ (CMS) new guidance document that significantly alters the standards that states must meet in order to be granted a waiver from certain Affordable Care Act (ACA) requirements. The Trump administration would permit states to revise the rules of their health insurance markets significantly, including to authorize the use of ACA premium subsidies for short-term insurance plans and association health plans that do not meet ACA benefit standards.
Although the administration maintains that the guidance will still require states to adhere to the guardrails of the ACA that relate to comprehensiveness of coverage, affordability of coverage, and the number of individuals insured, in practice the guidance will bifurcate the insurance markets and deny people with pre-existing conditions access to affordable and adequate insurance options. Healthier Americans will likely choose less expensive insurance options, including short-term plans and association health plans, especially if they may use premium subsidies for their purchase. Cancer patients will be especially hard-hit if they are left in an insurance market that includes only older and sicker consumers.
“This new guiding document is another considerable step backward as it echoes many of the same ACA repeal ideas that have been rejected over the last two years,” said Shelley Fuld Nasso, NCCS CEO. “Now, the Trump administration is taking another route to strip patient protections and offer skimpy health insurance. If adopted, these policies would take us back to the days when health plans didn’t have to cover pre-existing conditions or coverage for basic services like prescription drugs and hospital visits.”
“The Administration calls the new program the ‘State Relief and Empowerment Waiver,’” continued Ms. Nasso. “The new program could not be more inaccurately named, as it fails completely in providing patients relief and empowerment in their pursuit of quality and affordable health insurance.”
CMS Administrator Seema Verma stated that the agency plans to release a series of “wavier concepts” to give states a sense of the kinds of plans they might approve, including a waiver to permit the use of subsidy dollars to help people buy short-term health plans under a 1332 waiver. NCCS recently joined 11 other patient groups in filing an amicus brief challenging short-term health plans, as they would threaten access to adequate and affordable health insurance for people with cancer.
Related Posts
NCCS Statement on HHS Final Rule for Short-Term, Limited Duration Health Plans
