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
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.
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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.
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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
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
HHS Proposes Rule Requiring Drug Pricing in TV Ads
On Monday, Department of Health and Human Services (HHS) Secretary Alex Azar announced that HHS introduced a proposed rule to require direct-to-consumer television advertisements for prescription drugs include pricing information. According to the proposed rule, drugs paid for by Medicare or Medicaid must include the list price of the drug if it costs more than $35 for a month’s supply or the usual course of therapy.
Kaiser Health News reports that while this proposal is being endorsed by some groups for attempting to improve transparency, it is criticized by many others for not doing anything to drive down the actual cost of drugs. Further, many patient advocates, including NCCS, fear the new requirements could be confusing for patients due to vast differences in patients’ insurance plans and pharmacy benefits. There is also concern that this approach might inflict sticker shock to patients, especially cancer patients, and they may avoid talking to their care team about a treatment or cause them to avoid a certain treatment all together.
CHART OF THE WEEK
1,495 Americans Describe the Financial Reality of Being Really Sick
The New York Times
IMPORTANT READS
States Act to Safeguard Young Cancer Patients’ Chances to Have Children
Via Kaiser Health News
Many young adult cancer survivors are faced with the challenge of making some difficult choices in fertility preservation before starting treatment. Slowly, state by state, we are seeing some progress to include this benefit in insurance plans.
Hiding My Cancer Under the Hijab
Via New York Times Well Blog
Saema Khandaker, a cancer survivor and physician, writes a beautiful essay on the intersection of being a cancer patient and identity.
Cartoons Offer a Peek into Cancer Immunotherapy—and Scientists’ Minds
Via STAT News
Check out the collection of cartoons that author Neil Canavan has collected over the past two years from scientists illustrating cancer immunotherapy.
Republicans Are Suddenly Running Ads on Pre-existing Conditions. But How Accurate Are They?
Via New York Times Upshot
Pre-existing conditions protections are critical for cancer survivors and for the past two years, these protections and the ACA have been continuously threatened. As the midterm elections approach, more and more candidates on both sides of the aisle are pledging to protect individuals with pre-existing conditions, but not all of their records indicate they would follow through on their rhetoric and actually preserve these protections. Check out this article on candidates and their legislative record on pre-existing condition protections.
Widening Divide Between Medicaid Expansion and Non-Expansion States
Via Protect Our Care
As the fight for Medicaid Expansion lives on in several states, the release of a new U.S. Government Accountability Office (GAO) report reinforces what many already know—that people in states that have not expanded Medicaid have compromised access to health care.
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 HIGHLIGHTS
NCCS & Patient Orgs Push Back on Short-term Plans
Recently, the Centers for Medicare and Medicaid Services (CMS) announced it would allow insurers to offer expanded short-term, limited duration plans, known as “junk insurance.” This action led NCCS to join several other national organizations in filing an amicus curiae brief in support of a lawsuit that challenges the regulation authorizing short-term health insurance plans. The amicus brief explains to the court the potentially devastating impact of short-term health insurance plans on people with cancer and other Americans with serious and chronic diseases. Short term plans do not have to comply with the Affordable Care Act's (ACA) patient protections, including protections for pre-existing conditions or essential health benefits.
In addition to legal action on the short-term plans, there was also legislative action in Congress. On Wednesday, Senate Democrats forced a vote on a resolution that would reject the new CMS rule to allow short-term, limited duration plans. Despite Republican Senator Susan Collins voting in favor of the resolution, it failed to pass. As Kaiser Health News reports, the vote wasn’t a complete loss for Democrats as it forced Republicans to vote to protect health plans that don’t include the ACA’s patient protections, just a month before the midterm elections.
NCCS State-Based Cancer Advocacy Page
NCCS this week launched its first state advocacy webpage that hosts a plethora of resources for advocates who are interested in making an impact at the state and local level to improve cancer care and outcomes. The webpage features an NCCS webinar on state cancer coalitions, an advocacy toolkit, and state-specific resources for your advocacy efforts.
State comprehensive cancer coalitions are funded by the Centers for Disease Control and Prevention (CDC) and are made up of community stakeholders, including patient advocates. NCCS is a National Partner for the CDC’s Comprehensive Cancer Control Program and will assist state coalitions in their development of cancer control plans. Check out our state advocacy webpage to learn how you can get involved in state policy and contact Lindsay Houff at lhouff@canceradvocacy.org if you have any questions.
CHART OF THE WEEK
What Is Your State Doing to Affect Access to Adequate Health Insurance?
The Commonwealth Fund
With ongoing uncertainty at the federal level about the ACA and patient protections, some states are taking matters into their own hands. Visit this site to see if and how your state may be engaged to impact access to adequate health insurance.
IMPORTANT READS
ACA Premiums to Go Down
Via Washington Post
For the first time since the ACA was signed into law, insurance premiums for benchmark plans, which are used as a measure of the individual market’s success, are going to drop by 1.5% for 2019. Larry Levitt of the Kaiser Family Foundation says the reason is likely due to the Trump Administration’s decisions to abolish ACA subsidies and repeal the individual mandate, causing insurers to over-price coverage. “The overwhelming reason average benchmark premiums are coming down in 2019 is because premiums went up by so much in 2018,” said Levitt.
No More Secrets: Congress Bans Pharmacist 'Gag Orders' On Drug Prices
Via Kaiser Health News
On Wednesday, President Trump signed two bills that would ban gag clauses that prohibit pharmacists from telling customers that paying for their drugs with cash, rather than using their health insurance, could save them money. The bipartisan bill is a step forward to improve transparency in drug pricing. Several states adopted gag clause bans on their own, but this bill would eliminate the gag clauses across the U.S.
What Cancer Survivors Wish Others Understand
Barbara Tako, CURE Magazine
A poignant article by Barbara Tako, a breast cancer and melanoma survivor. As she points out, “Cancer took my smile away, but only for a while. Helping others understand what a cancer diagnosis is like will help improve the experience for everyone.”
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