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
Health Care Bills Discussed, ACA Lawsuit News
A group of Democratic lawmakers this week introduced legislation that would allow for a “Medicare Buy-In,” meaning Americans at age 50 could buy into the program for their health care coverage. Spearheaded by Sen. Debbie Stabenow (MI-D) and Rep. Brian Higgins (NY-26), the legislators say the main goal is to promote more affordable coverage.
Hearings on the ACA and drug pricing continued this week, as the House Energy and Commerce Committee held a hearing titled, “Strengthening Our Health Care System: Legislation to Reverse ACA Sabotage and Ensure Pre-existing Conditions Protections.” The hearing was centered around a series of bills that would address actions by the Trump administration to weaken the ACA’s markets and patient protections.
An important update in the Texas v. United States ACA lawsuit was announced on Valentine’s Day. Four additional states—Colorado, Iowa, Michigan, and Nevada—were granted their request to intervene in the lawsuit. The Fifth Circuit also denied a request for an expedited schedule. NCCS will continue to monitor and report on this important case.
CHART OF THE WEEK
The Out-of-Pocket Cost Burden for Specialty Drugs in Medicare Part D in 2019
Kaiser Family Foundation
While Congress takes a closer look at rising drug costs and considers options to reduce drug prices, the administration is releasing policy proposals that seek to do the same. One thing is certain: Out-of-pocket spending for prescription drugs, especially for cancer, are enormous.
Chart and Data Source: Kaiser Family Foundation
IMPORTANT READS
Life after cancer: More survivors living longer, facing new health challenges
USA Today
In this USA Today feature, NCCS co-founder Susie Leigh shares her experience with being diagnosed with cancer at 24. Since that diagnosis, she’s had breast, bladder and lung cancer, and developed congestive heart failure. Susie discusses how this impacted her life, the founding of the National Coalition for Cancer Survivorship, and the importance of furthering the understanding of survivorship issues throughout the cancer community.
What Is The Oncology Care Model, And Why Is The Evaluation Important?
Health Affairs
You may or may not have already heard of the Oncology Care Model (OCM). Either way, there’s a good chance it could become the future of how cancer care is delivered and important to understand the basics of the program. Organized by the Center for Medicare and Medicaid Innovation (CMMI), the goal is to “improve care coordination, appropriateness, and access for beneficiaries undergoing chemotherapy, while reducing total costs.”
This article is a good summary of what the OCM is, what it hopes to achieve, where it excels, and some of its shortcomings.
Opinion: How to fight the financial toxicity of cancer treatment
MarketWatch
We all understand the devastating financial impact a cancer diagnosis has on patients and their families. Recently referred to as financial toxicity, this article discusses it in-depth and offers some advice for patients and providers to help reduce this burden.
Racial Disparities in Cancer are Narrowing
National Public Radio (NPR)
A recent analysis by the American Cancer Society found that the gap in racial disparities in cancer are narrowing, with four major cancers declining more among blacks than among whites. Still, African-Americans bear a disproportionate share of the cancer burden in the U.S. and experience the lowest survival rates of any racial or ethnic group.
Related Posts
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HEALTH CARE HIGHLIGHTS
Drug Pricing at SOTU; House Health Care Hearing
At the State of the Union address, President Trump stated that two of his administration’s health care priorities are to protect individuals with pre-existing conditions and lower drug prices. The address did not specify how to achieve those goals. NCCS commented on several drug pricing proposals released previously by the administration, with a specific focus on what the proposals would mean for patients. The president called on Congress to pass legislation to address drug price transparency, and asked hospitals, drug companies and insurers to “disclose real prices.”
The president and many Members of Congress continue to reiterate their support of pre-existing conditions protections. However, the Texas v. United States lawsuit, brought forward by a group of Republican attorneys general, would upend these and other important protections in the ACA. The Trump administration’s Department of Justice declined to intervene in the case and protect the ACA in federal court, but the House of Representatives recently passed a resolution to intervene in the case. This week, the House Energy and Commerce Health Subcommittee held a hearing highlighting the possible effects of the ACA lawsuit and putting pre-existing conditions back in the spotlight.
CHART OF THE WEEK
Poorer countries are falling further behind on cancer outcomes
Axios
Axios shared an article on the rise of cancer deaths globally:
Data: Institute for Health Metrics and Evaluation; Chart: Harry Stevens/Axios
IMPORTANT READS
Cancer treatment at home is safe, effective, and closer to happening than you think
STAT News
This article breaks down the idea of providing cancer treatment at home, and steps that need to be taken to get closer to making it a reality.
Doctors dramatically reduce racial disparities in early-stage lung cancer treatment
Science Daily
More and more attention is being focused on racial and economic disparities in cancer care. This article discusses a study of an intervention program that helped reduce disparities for lung cancer in a specific population. "These results show promise for all cancer treatment centers," said Samuel Cykert, MD, professor of medicine at the UNC School of Medicine and co-principal investigator of the trial.
People diagnosed with cancer often don’t embrace the term ‘survivor’
The Conversation
The authors discuss the term “cancer survivor” and the difficulties of applying a general term to cover all of patients’ individual experiences.
Former Rep. Dingell, US’s longest-serving lawmaker, dies
Washington Post
Rep. John Dingell, over his 50+ years as a public servant, played integral roles in helping move health care forward in America. He helped pass Medicare and Medicaid into law in 1965 and was one of the first to introduce Medicare for All bills in Congress.
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HEALTH CARE HIGHLIGHT
Gov't Shutdown Affects FDA; Congressional Hearings on Health Care Scheduled
The government shutdown is now the longest in U.S. history. This week, NCCS joined 46 groups in a letter to Congress and President Trump highlighting the impact the shutdown is having on the FDA’s work on behalf of patients. The groups stated that, “…we fear that this continued shutdown not only puts the current health and safety of Americans at risk, but has begun to put future scientific discovery and innovation in jeopardy.” Read the letter here »
With Democrats now in control of the House of Representatives, some Democrats in both the House and Senate are renewing their efforts to further the discussion on Medicare for All. At least two House committees will hold hearings to examine the various plans that have been put forth to date. With this new focus, we are beginning to see the health care industry begin to organize their outreach efforts to provide a counter narrative pushing back on the merits of a single-payer system.
As Congressional committees are finalized, hearings are starting for the 116th Congress. The first hearing of the Senate Finance Committee, chaired by Senator Grassley of Iowa, on Monday will focus on prescription drug prices. The hearing "will be the first in a series of hearings scrutinizing prescription drug pricing and considering policy and oversight solutions to lower costs for American patients," Grassley said. The Democratic-led House Oversight and Reform Committee will also hold a drug pricing hearing on the same day, showing bipartisan concern over rising drug prices.
CHART OF THE WEEK
KFF Health Tracking Poll – January 2019: The Public On Next Steps For The ACA And Proposals To Expand Coverage
Kaiser Family Foundation
There is a lot of interesting information from the latest Kaiser Family Foundation Tracking Poll. This table shows that despite the common rhetoric heard, there is substantial public support for several health care related proposals.
IMPORTANT READS
Equity, not equality, will advance cancer care
The Hill Op-Ed
The author makes an important distinction between equality and equity of cancer care delivery. He argues that generally speaking, most patients are treated equally on an individual level. However, there exists tremendous variation and underrepresentation when it comes to population level difference to be inclusive of such things as race, socio-economic status, and geography.
The Financial Burden of Cancer Care
Texas Medical Association
A radiation oncologist in rural Texas discusses the impact he sees from financial toxicity, and cites a recent study that “42 percent of cancer patients deplete their life savings within two years of diagnosis.”
Insomnia and Cancer
Cure Magazine
The author discusses how she failed to mention her insomnia to her doctor for over five years, only to find out that insomnia is very common for cancer survivors. Her doctor prescribed medication to help her sleep. She notes, “Cancer survivors need to realize that sleep increases the immune system to fight infection, which is extremely important.”
Rural Hospitals in Greater Jeopardy in Non-Medicaid Expansion States
Pew Charitable Trusts
This Pew article explores the challenges hundreds of rural hospitals are facing, especially in states that didn’t expand Medicaid under the Affordable Care Act (ACA). The article quotes Jeff Lyle, CEO of Falls Community Hospital in Texas, why he and other hospital administrators are pushing to join Medicaid expansion saying, “It would mean a fair number of people we see who have no insurance would have insurance,” Lyle said. “And for us, a dollar is better than no dollar.”
CVS paid itself far more than some major competitors, report says
Columbus Dispatch
The Columbus Dispatch cites a report from the state of Ohio that shows that CVS Caremark, the pharmacy benefit manager owned by CVS, was reimbursing CVS stores at a much higher rate than many of its competitors.
It remains to be seen if this information will impact the merger between CVS and Aetna that is currently being reviewed by a federal judge.
When Cancer Meets the Internet
New York Times
Dr. Schapria of Stanford University Medical Center warns of “Doctor Google,” and says it’s easy for people to land on a site filled with misinformation that leads them to make decisions that may not be in their best interests.
She is the editor of www.cancer.net, which provides scientifically vetted information for patients about cancer and its treatment.
Related Posts
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HEALTH CARE HIGHLIGHT
Protecting Medicare Part D's Protected Classes and Congressional Updates
This week, NCCS joined the American Cancer Society Cancer Action Network in a campaign against proposed Medicare Part D changes. More than 50 groups joined the campaign in opposition to the administration’s proposal to change Medicare Part D's protected classes drug coverage, which would give Medicare plans the option to limit coverage of drugs in six categories, including cancer drugs.
The government shutdown continues, but Congress is in session and other legislative priorities continue to move forward. Committee assignments continue to roll out this week as Rep. Lloyd Doggett (TX-35) was named as health subcommittee chair on Ways and Means. His position on the committee will make him an important player in all health care matters in 2019. Rep. Anna Eshoo (CA-18) was confirmed as the health subcommittee chair of the Energy and Commerce Committee. Meanwhile, on the Senate side, Republican Members on the Finance committee met to discuss drug pricing with HHS Secretary, Alex Azar. Reporting indicates that GOP members remain split on drug proposals and how best to move forward.
CHART OF THE WEEK
Compare Democrats' many Medicare-for-All proposals with this chart
PBS Newshour
Medicare-for-All and other proposals to expand health coverage will be getting a lot of attention in the 116th Congress. Check out the chart below created by PBS that shows what each proposal would do.
Chart: PBS Newshour
IMPORTANT READS
Arkansas a 'cautionary tale' for states considering Medicaid work requirements, health advocates say
Arkansas Times
The Center for Budget and Policy Priorities released an analysis on Arkansas's work requirement policy for certain Medicaid beneficiaries, saying the “CBPP report concludes that Medicaid work requirements are inherently flawed and ‘can't be fixed.’" This comes just a few days after updated numbers were released in Arkansas that show 18,164 low-income people were “kicked off the government-funded insurance program due to work rule noncompliance in 2018.”
Suicide risk 4 times worse for cancer patients, study finds — What clinicians can do to help
Atlanta Journal-Constitution
A study from Penn State College of Medicine provides new insights into suicide rates of cancer patients. In addition to the headline, the article also points this is a “two-fold increase from a similar 2002 study.”
Can States Fix the Disaster of American Health Care?
New York Times
Bold health initiatives proposed by officials in California, Washington and other states could create blueprints to follow. Elizabeth Rosenthal argues that states have a solid track record when it comes to being good examples for experimentation, such as when Massachusetts introduced “Romneycare” in 2006, which was the blueprint for the Affordable Care Act.
Regular Physical Activity — Even Initiated Postdiagnosis — Improves Survival for Cancer Patients
Oncology Nurse Advisor
The article highlights that "the study, which was published in the journal Cancer Causes & Control, found that people who exercised regularly as a lifestyle — both before and after diagnosis — experienced a 39% reduced risk of mortality compared with patients who were inactive as a lifestyle."
A Cancer Rap, With Thanks to Nina Simone
New York Times
This week, in the New York Times' “Living With Cancer” section, a cancer survivor writes how after many cancer-related setbacks, she started singing along to Nina Simone.
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HEALTH CARE HIGHLIGHT
ACA Resolution and Drug Pricing
This week, the House of Representatives voted to formally intervene in Texas v. United States, the lawsuit seeking to invalidate the Affordable Care Act (ACA). With support from three Republican members, it passed by a vote of 235-192. The resolution now heads to the Senate where Republican leaders will likely not bring it up for a vote.
This vote follows passage of last week’s provision authorizing the House legal counsel to defend the law. The case was filed last year, when 20 Republican Attorneys General filed a lawsuit challenging the constitutionality of the ACA, arguing that because the individual coverage mandate was essentially eliminated by Congress in the Tax Cuts and Job Reform Act, the rest of the law cannot stand on its own. Read NCCS' official statement on the matter »
In addition, drug pricing dominated the news this week. Early in the new year, Health Affairs reviewed prescription drug policy in 2018 and analyzed what to expect in 2019. On January 1, drug makers raised the price of more than 250 medications by an average of 6.3 percent. Yesterday, Sen. Bernie Sanders (VT) and Rep. Elijah Cummings (MD-7) introduced legislation aimed at reducing drug prices. The legislative package included several provisions, including tying U.S. median drug prices to those in several other countries and allowing the HHS Secretary to negotiate Medicare Part D prices.
CHART OF THE WEEK
Cancer in America Is Way Down, For the Wealthy Anyway
Bloomberg News
On Tuesday, the American Cancer Society released its annual Cancer Facts and Figures. Good news made headlines that cancer deaths have been dropping since the early 1990s, as much as 27 percent between 1991 and 2016. However, the report also notes, “Although the racial gap in cancer mortality is slowly narrowing, socioeconomic inequalities are widening, with the most notable gaps for the most preventable cancers.” Read More »
Chart: Bloomberg News
IMPORTANT READS
Companies Spent Nearly $30 Billion in One Year Marketing Medical Products to Americans
Los Angeles Times
Referring to a study published in the Journal of the American Medical Association, this article highlights the increase of annual spending on direct-to-consumer marketing of healthcare. “Drug makers and other healthcare companies spent almost $30 billion in a single year to influence the medical choices made by Americans and steer them toward treatments that were newer, vastly more expensive and sometimes risker than their tried-and-true alternatives, new research shows.”
Colorectal Cancer is Killing More 20-to 30-year olds. We have no clue about why.
Vox
“It’s one of the mysteries that has puzzled cancer epidemiologists: Why are younger and younger people becoming sick with colorectal cancer?”
Drug Giant Eli Lilly to Purchase Tiny Startup in $8B Deal To Get Access To Company’s Cancer Treatments
Kaiser Health News
Eli Lilly purchased Loxo Oncology, Inc., a Stamford, Connecticut-based biotechnology company that is developing cancer treatments that target a tumor’s genetic markers.
Giant drug deal: Bristol-Myers Squibb buying Celgene for $74 billion
New York Business Journal
Bristol-Myers Squibb (BMS) Co. purchased Celgene Corp. in a deal worth $74 billion. BMS noted the acquisition will strengthen its cancer and inflammatory disease drug product. This continues the recent trend of mergers in the biopharmaceutical industry. It remains to be seen if and how these mergers will impact patients and their access to new and effective drugs.
Related Posts
NCCS Statement on District Court Ruling Affordable Care Act Unconstitutional
“The court’s decision declaring the Affordable Care Act (ACA) unconstitutional puts millions of Americans with pre-existing conditions, including many with cancer, at risk of losing access to affordable and adequate health insurance,” said NCCS CEO Shelley Fuld Nasso. “The United States Congress affirmed its support for protections for those with pre-existing conditions, and virtually every candidate in the midterm elections affirmed support for these protections. However, this court decision returns consumer protections to 2009 – before the protections of the ACA – and creates barriers to care for many Americans.”
Several state attorneys general already signaled their intention to appeal the ruling, and NCCS will lend its support to those efforts.
“We hope that this decision will be reversed on appeal. In the meantime, uncertainty will be a fact of life for many vulnerable Americans whose access to care depends on the ACA,” continued Ms. Fuld Nasso. “This decision, coming at the end of the ACA enrollment period and during the holiday season, sends a Scrooge-like message to American consumers who depend on federal health care protections.”
NCCS will seek to reassure patients that the law will be enforced pending appeal, and will support a speedy appeal decision restoring the ACA.
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Note: The Health Care Roundup will not be published during the holidays. NCCS will resume publication on January 11.
HEALTH CARE HIGHLIGHT
Government Shutdown Threat, NCCS Webinar On Health Care in New Congress, and Federal Pass-Through Funding for Reinsurance Programs
After days of tense negotiations, the House and Senate left town Thursday with no plan to avoid a partial government shutdown. The House will return December 19, leaving only 72 hours for both parties to reach an agreement before a shutdown goes into effect at midnight on December 21. Most of the tension surrounding the potential shutdown surrounds funding for President Trump’s border wall.
This week, NCCS hosted a post-election webinar with special guest Zack Marshall, Legislative Director for Congressman John Yarmuth (KY-3). Zack provided a recap of the election and predictions for what to expect regarding health care policy for 2019. A recording of the webinar will be shared via email with those who registered as soon as it is available.
On December 10, the Centers for Medicare and Medicaid Services (CMS) posted notifications to states on the amount of federal pass-through funding they will receive under the ACA’s 1332 waivers. Alaska, Maine, Maryland, Minnesota and Oregon used a section 1332 waiver to adopt a state-based reinsurance program, which helps insulate insurers from heavy losses if they end up enrolling a sicker population with higher claims. Insurers can thus lower their premiums, instead of raising rates for everyone.
To learn more about these waivers and the pass-through funding, check out the latest Health Affairs article.
CHART OF THE WEEK
Distribution of Eligibility for ACA Health Coverage Among those Remaining Uninsured as of 2017
The Kaiser Family Foundation
New analysis by the Kaiser Family Foundation found that 15 million people, or 55% of those who are uninsured, are eligible for ACA premium subsidies or Medicaid/CHIP. December 15 is the deadline to sign up for health insurance and to qualify for premium subsidies for 2019 in most states.
Chart: Kaiser Family Foundation
IMPORTANT READS
Congress skips town as shutdown nears
Politico
With only a few days left to negotiate a way to avoid a partial government shutdown, the House and Senate left town Thursday without making progress on a deal.
Analysis of Democrats’ 8 plans for universal health care and how they work
Vox
Vox reporters read and analyzed the 8 congressional plans to expand Medicare and Medicaid. “These plans are the universe of ideas that Democrats will draw from as they flesh out their vision for the future of American health care.”
Health care law is alive despite Trump’s 2-year drive to kill it. So sign up for insurance.
USA Today
Former CMS administrator, Andy Slavitt, outlines what’s happening in open enrollment this year and stresses the need to get the word out about the Saturday deadline for enrolling through the ACA.
Senate Democrats introduce bill to allow government to block drug price rises
Reuters
Democratic Sens. Richard Blumenthal (Conn.), Kamala Harris (Calif.), Amy Klobuchar (Minn.) and Jeff Merkley (Ore.) introduced legislation to allow the government to prohibit prescription drug price hikes if they are unjustifiably expensive. While both parties continue to express interest in passing bills in response to rising drug costs, concrete steps forward remain elusive.
Related Posts
NCCS Strongly Objects to New CMS Waiver Options That Seek to Further Undermine the ACA
