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
Comparing Health Care Proposals
As Medicare-for-all and other public health care proposals continue to be released by Members of Congress, Kaiser Family Foundation created a great interactive summary which they update regularly to compare these plans. Most recently, Senator and presidential candidate Bernie Sanders introduced his Medicare-for-all bill in the Senate. Check out the comparison analysis »
House Holds ‘Surprise Billing’ Hearing
Surprise medical billing has been getting a lot of attention in the media and on Capitol Hill – on both sides of the aisle. Just last week, the House held a hearing on the topic to explore the scope of the problem and discuss solutions to address the issue. The hearing did have a clear agreement: that patients should not be responsible for being great negotiators when it comes to their health care and any solution must protect patients.
Read more about the hearing »
CHART OF THE WEEK
Uninsured Adults in States that Did Not Expand Who Would Become Eligible for Medicaid under Expansion
Kaiser Family Foundation
This graph links to a helpful interactive fact-sheet by Kaiser Family Foundation showing how many adults would be covered by Medicaid if the last states would expand coverage. If these 14 states expanded coverage, 4.4 million more Americans would be eligible for health care coverage.
IMPORTANT READS
‘It’s like pausing your life’: How cancer can put young adults years behind in finances and family
Philadelphia Inquirer
It is an understatement to say that cancer disrupts a person’s life, regardless of age at diagnosis. This article looks particularly at the lasting impact of a cancer diagnosis for young adults who are trying to establish their careers, become financially independent, and rely less on their parents. Young adults of course face large medical bills, in some cases on top of student loans, etc., and for many the costs of fertility treatment not covered by insurance.
Unraveling why some people get not one, not two, but many cancers
Washington Post
This interesting article by Marlene Cimons provides an in-depth look at what the latest science says about why some people develop multiple cancers over their lifetimes.
Medicare Part D must evolve to help people fight cancer
STAT News
In recent years, there have been incredible advancements in cancer treatments. But these innovations are only valuable if patients have access to them and Medicare Part D has remained relatively unchanged in the last 13 years.
This article explores what the gaps are and what can be done to fix them.
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HEALTH CARE HIGHLIGHTS
NCCS Joins Amicus Brief in ACA Lawsuit
On April 1, seventeen patient groups, including NCCS, filed an amicus curiae (“friend-of-the-court”) brief in the U.S. Court of Appeals for the Fifth Circuit in the case Texas v. United States. The brief cited the devastating impact patients would face should the court uphold the district court ruling to invalidate the Affordable Care Act (ACA). The patient groups argue the law was intended to help protect patients with pre-existing conditions, and Congress’s inaction to repeal or replace the ACA reinforces that intent.
Read the statement »
House Advances ACA Stabilization, Drug Pricing Bills
On Wednesday night, the House Energy and Commerce Committee advanced several bills to shore up the ACA. All six bills passed the committee along party line votes. These bills included legislation to provide state-based ACA marketplaces, refund the federal navigator program, and restores a reinsurance program aimed at lowering ACA premiums. The committee also passed six drug pricing bills including the CREATES Act, which would penalize brand-name drug manufacturers that withhold sample products from generic makers by citing safety concerns.
Maine Medicaid Expansion Approved
Maine finally got its approval to expand Medicaid after a years’ long battle between the legislature and the governor. CMS formally approved Maine's State Plan Amendments to adopt the coverage expansion, which insures more than 70,000 low-income people in the state. The coverage is retroactive to July 2, 2018, the date that it should have taken effect under a 2017 ballot measure blocked by former Gov. Paul LePage.
Trump On Health Care Reform
President Trump this week first announced Republicans would take another stab at drafting their own health care reform, but backtracked on the idea hours later. “It's now apparent that President Trump will not push for repealing and replacing the ACA before the election. But, it's also clear that the future of the ACA will be very much on the ballot once again in 2020,” says Larry Levitt of the Kaiser Family Foundation.
CHART OF THE WEEK
Trump is reading the GOP base wrong on the Affordable Care Act
Axios
IMPORTANT READS
Care Coordination for Cancer Survivors: Collaboration With Primary Care Teams
Journal of Clinical Pathways (JCO)
NCCS is a long-time advocate for better care coordination, including when patients transition from having their care managed primarily by their oncology team to their primary care physician. This article discusses some of those challenges, including:
“The main barriers in transition to primary care, presenters said, include lack of formal training/education/confidence in primary care providers; resource differential; patient expectations and preferences; and unfamiliarity of multimorbidity management.”
Stage 4 cancer and a brain tumor: Five simple lessons for how I’ve learned to live in the present
Washington Post
In this thoughtful article, a stage 4 melanoma patient shares the lessons he's learned as he continues to face his cancer diagnosis. He writes eloquently about his faith, caring for caregivers, and not allowing cancer to take over who you are.
Patchy Sunscreen Application Leaves Skin Vulnerable to Cancer
National Public Radio (NPR)
Dermatologists say cancer-prone areas are often left neglected. Joshua Zeichner, a dermatologist and researcher at New York City's Mount Sinai Hospital, says he regularly sees patients forgetting to slap sunscreen on the sides of their neck and the tips of their ears — spots, he says, that are particularly sensitive to UV rays owing to the thinness of the skin.
Colorado Sen. Michael Bennet diagnosed with prostate cancer
Axios
Senator Michael Bennet of Colorado announced Wednesday that he was diagnosed with prostate cancer last month. In his twitter post, he announced he was diagnosed early and his prognosis is good. He plans to have surgery during an upcoming Senate recess and return to work.
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HEALTH CARE HIGHLIGHTS
There was a steady stream of health care news this past week, including court rulings regarding Medicaid work requirements and association health plans, as well as a major shift in the administration’s position on the Affordable Care Act (ACA) lawsuit. Democrats introduced new legislation to strengthen the ACA on its 9-year anniversary. Here’s what you need to know about these developments:
ACA Lawsuit
The Justice Department announced that the Trump administration changed its position on the ongoing ACA lawsuit and agrees with the Judge’s December ruling that the entire law should be struck down. Previously, the administration wanted to strike down only the law’s protections for pre-existing conditions and the individual mandate. Should the courts invalidate the entire law, as the administration wishes, major protections for people with pre-existing conditions, Medicaid expansion, and caps on out- of-pocket limits would all disappear.
The New York Times reports on what would happen if the entire law is struck down: “The ACA touches the lives of most Americans. Some 21 million could lose health insurance if the Trump administration were to succeed in having the law ruled unconstitutional.” Furthermore, the administration took this position without offering any replacement health care plan should their efforts prove successful.
Medicaid Work Requirements Struck Down
On Wednesday, a federal judge blocked Medicaid work requirements in Kentucky and Arkansas, ruling that the policy would result in tens of thousands losing health care coverage. The rulings presented a serious setback for the administration as they made receiving government health coverage contingent upon work a central policy since taking office. So far, the administration allowed eight states to impose work requirements for Medicaid recipients and several other states are in the process of seeking permission to move forward with work requirements.
Association Health Plans
In another win in federal courts for supporters of the ACA, a judge ruled Thursday that the administration’s efforts to expand association health plans—plans that don’t meet coverage rules of the ACA—are illegal. “The final rule is clearly an end-run around the ACA,” said Judge Bates, an appointee of President George W. Bush. “Indeed, as the president directed, and the secretary of labor confirmed, the final rule was designed to expand access to AHPs to avoid the most stringent requirements of the ACA.” Association health plans do not have to comply with the ACA rules and regulations and have been called “junk plans” as they often do not include coverage for hospital visits, prescription drugs, maternity care, or other critical benefits.
Legislation to Strengthen ACA
On Tuesday, House Democrats introduced new legislation called the “Protecting Preexisting Conditions and Making Health Care More Affordable Care Act of 2019,” that would strengthen and expand upon the ACA. This bill includes several changes that would expand the availability of ACA subsidies to make plans more affordable to more consumers, would fund outreach and navigator assistance for the ACA, and fund state-based reinsurance programs. A one page summary of the legislation can be found here.
CHART OF THE WEEK
Workers and Retirees Alike Are Paying More for Health Care
Fortune Magazine
A useful graph that provides an overall snapshot of how health care costs increased compared to worker income from 2006 – 2016:
IMPORTANT READS
My Friend’s Cancer Taught Me About a Hole in Our Health System
New York Times
Author Aaron Carroll shares the personal experience of his close friend facing cancer and highlights the considerable time, and financial costs to his caregivers that are almost entirely overlooked.
Adapting to the Changing Needs of Cancer Patients
Media Planet
Advocates with the National Coalition for Cancer Survivorship discuss their cancer experiences and reflect on how their care needs changed over the course of their care continuum.
Communication Intervention Improves End-of Life Conversations Between Patients and Oncology Providers
Oncology Nurse Advisor
This article describes a recent study looking at improving provider-patient communication in high-risk cancer diagnoses. The study authors conclude, “this cluster randomized clinical trial demonstrates that a communication quality-improvement intervention resulted in significant improvements in 4 key conversation indicators, including more, earlier, better, and more accessible oncology clinician–led serious illness conversations.”
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HEALTH CARE HIGHLIGHTS
Kansas House Sends Medicaid Expansion to Senate
This week, Kansas is one step closer to expanding Medicaid in the state, after lawmakers passed a bill in the House that would add coverage for an estimated 150,000 Kansans. The expansion bill will head to the Senate where the outcome is unknown. From the Wichita Eagle: “The plan expands eligibility for medical assistance to all adults who are under 65 and make less than 133 percent of the federal poverty level, or $16,611.70 for an individual… Expansion would begin Jan. 1, 2020.”
ACA Anniversary
Today marks the 9th anniversary of the Affordable Care Act (ACA). Because of the ACA, uninsured rates fell dramatically for almost all demographic groups as the law took effect. Insurance companies can no longer deny individuals health coverage because of a pre-existing condition, or impose lifetime caps. Happy birthday to the ACA!
CHART OF THE WEEK
Strategies Used by Adults Aged 18–64 to Reduce Their Prescription Drug Costs, 2017
Centers for Disease Control (CDC)
In a paper published by the Centers for Disease Control and Prevention, this chart shows that some patients, especially those who are uninsured, do not take medications as prescribed in order to cope with the cost of prescription drugs.
IMPORTANT READS
Strategies Used by Adults Aged 18–64 to Reduce Their Prescription Drug Costs, 2017
Centers for Disease Control (CDC)
As mentioned in the chart above, this paper discusses strategies patients are using when prescribed medication to lower costs. It highlights that uninsured individuals attempt a variety of ways to lower their drug costs. While financial impacts are certainly one thing to consider, this paper helps show that drug costs also impact overall health and adherence to prescribed medication treatment.
Reports of Breast Implant Illnesses Prompt Federal Review
New York Times
A New York Times report on the new attention to the risks associated with breast implants, an issue they also note that was assumed to be “settled” a decade ago. The Food and Drug Administration (FDA) is evaluating breast implant risks and benefits, including through a public meeting.
Death By 1,000 Clicks: Where Electronic Health Records Went Wrong
Kaiser Health News
Electronic health records were supposed to make things easier and better for patients and allow researchers to harness the big data within them. But 10 years after a law to accelerate the digitization of medical records passed, America has little to show for its investment.
Short-Term Health Plans
Public Health Post
An article written by former NCCS staff member, Julia Garcia, outlines a recent study that found that insurers' aggressive marketing of short-term health plans may cause confusion for consumers. These plans do not cover pre-existing conditions protections or essential health benefits, like prescription drug coverage and hospital visits.
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HEALTH CARE HIGHLIGHTS
White House Releases FY 2020 Budget
Earlier this week, the White House released the President’s Budget. This year's budget proposes to repeal and replace the Affordable Care Act (ACA) and cap Medicaid, and cuts federal health spending by $659 billion over 10 years. The budget also proposes shaving $818 billion from projected spending on Medicare over 10 years and cutting nearly $1.5 trillion from projected spending on Medicaid. In place of the current Medicaid structure, President Trump’s budget would give states “market-based health care grants” over 10 years. Congress rejected this idea in 2017 as part of the Graham-Cassidy bill because it would essentially cap Medicaid and would not keep pace with rising health care costs.
As the New York Times reports, the budget is seen by Democratic leaders as dead on arrival and is unlikely to have much effect on actual spending levels, which are controlled by Congress.
NCI's Sharpless Named FDA Acting Commissioner
This week, it was announced that Dr. Ned Sharpless of the National Cancer Institute (NCI) will become Acting Commissioner of the Food and Drug Administration (FDA) once Dr. Scott Gottlieb steps down. Dr. Sharpless has served as director of the NCI since 2017, and is also chief of the aging biology and cancer section in the National Institute on Aging’s Laboratory of Genetics and Genomics. His research focuses on the relationship between aging and cancer, and development of new treatments for melanoma, lung cancer and breast cancer.
NCCS is pleased to have Dr. Sharpless join us later this month at our biannual Cancer Policy Roundtable event to hear more about his focus areas and new role at the FDA.
CHART OF THE WEEK
The President’s Budget Request
Centers for Medicare and Medicaid Services (CMS)
This year's budget proposes to repeal and replace the ACA and cap Medicaid, and cuts federal health spending by $659 billion over 10 years, as seen in the chart below:
IMPORTANT READS
Survivorship Care Plans May Help Patients After Cancer Treatment
Oncology Nursing News
Deborah A. Boyle, MSN, RN, AOCNS, FAAN, editor in chief of Oncology Nursing News, talks about the importance of survivorship care planning. She admits that while there’s still debate concerning care plans, “there needs to be a communication tool for all stakeholders involved with cancer survivorship.”
Few Physicians Using CMS Advance Care Planning Codes
Medscape – (Free registration required to view article)
NCCS is a long-time proponent of advance care planning and palliative care. This article outlines how many physicians are not using advance care planning codes for Medicare beneficiaries, saying:
2019 Top 10 List of Patient Safety Concerns
Medscape – (Free registration required to view article)
The non-profit ECRI Institute recently released it’s “2019 Top 10 Patient Safety Concerns” report. “This was the second year in a row that diagnostic errors were flagged as the most serious safety challenge in ECRI's annual compendium.” The implications for the millions of cancer patients diagnosed each year, and the millions more in survivorship, are obvious.
State of Cancer Care in America (SOCCA): Reflections on an Inaugural Year
Journal of Oncology Practice
This editorial, published in the American Society of Clinical Oncology’s journal as part of their "SOCCA" series of articles, provides an oncologist perspective of cancer care in America.
The authors point out:
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HEALTH CARE HIGHLIGHTS
Senate Finance Hearing on Drug Pricing
The Senate Finance Committee held a hearing this week on drug pricing, and Senators questioned seven CEOs from top pharmaceutical companies. While Senators of both parties asked tough questions about pricing practices and price increases, some experts suggested that the hearing was tamer than expected. In the Washington Post, Paige Cunningham wrote, “In the hearing on drug prices — billed as one of the biggest Congress-vs.-industry showdowns since the tobacco hearings of the 1990s — exchanges between the lawmakers and the CEOs were remarkably unremarkable.”
Senators showed some bipartisan support for proposals aimed at reducing drug prices, while pharmaceutical company executives pushed back on most proposals and described flaws in the system that drive up prices. Some executives indicated a willingness to lower prices if changes to the rebate system are implemented in both the Medicare and commercial markets. Executives expressed support for the CREATES Act, which would remove barriers to the testing and approval of lower-cost generic products.
Watch the hearing on C-SPAN.org »
Medicare for All Bill Introduced in House
Representative Pramila Jayapal (D-WA) introduced the first “Medicare for all” legislation this week, with more than 100 Democratic co-sponsors in the House of Representatives. The legislation would reshape the Medicare program. Margot Sanger-Katz of The New York Times writes:
Note: In last week's Health Care Roundup, we incorrectly stated that the Senate Finance drug pricing hearing was scheduled for Wednesday of this week. The hearing occurred on Tuesday. We regret the error.
CHART OF THE WEEK
Claims Denials and Appeals in ACA Marketplace Plans
Kaiser Family Foundation
The Kaiser Family Foundation reported this week that while insurers on Healthcare.gov denied nearly one in five claims for in-network services, less than one percent of consumers appealed denied claims.
Chart: Kaiser Family Foundation
IMPORTANT READS
Cancer Complications: Confusing Bills, Maddening Errors And Endless Phone Calls
National Public Radio (NPR)
This article profiles Carol Marley as she struggles with both the financial and logistical toxicity of cancer treatment. She describes the financial toll her treatment is taking, even with good health insurance, as well as, the stress of navigating the myriad of bills she is facing, including a $18,400 bill for chemotherapy and a $870 bill for an MRI. Both claims were denied, one because it was submitted late and the other because there was no preauthorization. She said, "It's not any one individual. It's not any one system or provider. The whole system is messed up. … There's no recourse for me except to just keep making phone calls."
FDA sounds an alarm on using robotic devices in cancer surgeries, citing concerns about safety and results
STAT News
The FDA warned against the use of robotically assisted devices in some cancer surgeries, including mastectomies, a move based on a study that evaluated 14 years of adverse events reported and collected in the FDA’s MAUDE (Manufacturer and User Facility Device Experience) database.
The FDA “recommends that patients and doctors discuss the benefits, risks, and alternative procedure options before making treatment decisions. The agency also advised patients to ask their doctors about training, experience, and outcomes related to the use of robotically assisted surgery.”
NIH apologizes for its failure to address sexual harassment in science
STAT News
Dr. Francis Collins, director of the National Institutes of Health (NIH), apologized for NIH’s role in the culture of sexual harassment and outlined steps NIH will take. Collins said that sexual harassment in science is “morally indefensible, it’s unacceptable, and it presents a major obstacle that is keeping women from achieving their rightful place in science.”
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HEALTH CARE HIGHLIGHTS
Medicare Spending, Surprise Billing, Drug Pricing
This week, the Centers for Medicare and Medicaid Services (CMS) published new health care spending projections for the United States. Unsurprisingly, Medicare spending growth is projected to outpace that of other payers in the coming decade due to enrollment growth and higher use of services. See a breakdown of the projections here.
On Wednesday, six hospital groups laid out an eight-point plan for dealing with surprise medical billing, a concept that has gained popularity among both parties in Congress. The plan was sent to Congressional leaders and included popular proposals like ensuring patients aren’t stuck with exorbitant bills. The groups also stated they want patients to have adequate provider networks.
Next week, the Senate Financial Services Committee will hold another hearing on the topic of drug prices, this time with seven CEOs of major pharmaceutical companies. To watch the hearing on Wednesday, visit the live stream.
CHART OF THE WEEK
CMS Estimates Annual U.S. Health Care Spending to Hit $5.96 Trillion by 2027
Morning Consult
As mentioned above, CMS projects the United States will spend $5.96 trillion on health care costs in 2027. These fiscal pressures could impact cancer care delivery, especially in Medicare, considering more baby boomers will move into Medicare and a majority of cancer diagnoses are in adults 65 and older.
Chart: Morning Consult
IMPORTANT READS
Personalized Risk-Stratified Cancer Follow-Up Care: Its Potential for Healthier Survivors, Happier Clinicians, and Lower Costs
Journal of the National Cancer Institute
This commentary piece was written by Deborah K. Mayer, PhD, RN, AOCN, FAAN, interim director of the National Cancer Institute’s Office of Cancer Survivorship, and Catherine M. Alfano, PhD, vice president of survivorship at the American Cancer Society. In the piece, they discuss the changing approaches to delivering survivorship care, considering there will be more cancer survivors with fewer oncologists to treat them.
The Financial Toxicity of Illness
New York Times Well Blog
In Susan Gubar’s latest thoughtful piece, she sets her focus on the devastating effects of financial toxicity for patients, saying, “cancer treatment escalates the possibility of penury, and treatment-produced fiscal catastrophes are tied to cancer deaths.” She examines the dilemma we as individuals and as a society face of where to draw the line between treatment costs and benefit.
Why Do Only Eight Percent Of Cancer Patients In The U.S. Participate In Clinical Trials?
Forbes
It’s well known that very few patients participate in clinical trials in America, for a variety of reasons. A new study looks further into what some of those reasons are, with some interesting results.
“Most of the time it’s not up to the patient. Instead, structural and clinical barriers are the reasons more than 3 out of 4 patients do not participate in trials,” said Dr. Joseph Unger, who led the research.
'Not Letting It Define Us' — Walking The Runway With Metastatic Breast Cancer
National Public Radio (NPR)
Last week, the third annual #Cancerland fashion show took place at New York Fashion Week. Two dozen models, all living with metastatic breast cancer, walked the runway. The event benefitted METAvivor, a metastatic breast cancer organization, and all the proceeds will be put toward research.
Rebekah Howerton described why she participated:
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