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.
Status 6/27: The Department of Justice (DoJ) determined that it will NOT defend the Affordable Care Act (ACA) in the lawsuit filed by the state of Texas and several other states. (Read More here.) If the position of the DoJ is upheld by the courts, the pre-existing condition protections that are critically important to cancer patients will be eliminated.
On June 27, a number of NCCS CPAT advocates and others with pre-existing conditions participated in a press conference highlighting how vital these protections are for patients with chronic illness. Thank you to NCCS CPAT Members Randy Broad and Jamie Ledezma for sharing their story. Watch the press conference stream »
How Can I Get Involved?
ACA Status Updates
HEALTH CARE HIGHLIGHTS
New ACA Replacement Plan?
This week, President Trump hinted at his intention to introduce a new health care plan. Health care remains a very popular political issue among most voters. With widespread reports saying that many Republicans in Congress would rather not make health care or Affordable Care Act (ACA) replacement a top issue in the upcoming elections, it will be interesting to see whether the president follows through in the months ahead.
Direct-to-Consumer (DTC) TV Advertising Rule
In December, we shared information about a new rule from the Department of Health and Human Services requiring drug companies to post drug prices in television commercials. Experts have said that it’s unclear whether price transparency will have an effect on prices. Last week, several companies, including Amgen Inc., Merck & Co. Inc. and Eli Lilly and Co., and the Association of National Advertisers, file suit to block the rule. Amgen highlighted concerns regarding freedom of speech, and that the rule “may mislead patients and fails to take into consideration ‘differences among insurance, treatments, and patients themselves.’” (Stat News)
Medicaid Work Requirements
Two studies shed light on the new Medicaid work requirements. Researchers from the Harvard Chan School of Public Health reported on the initial results of Arkansas’ work requirements, the first implemented in the country. They found a significant loss in coverage, an increase in the uninsured rate, with no corresponding increase in employment rates.
“The idea of work requirements is to get people into new jobs and private insurance. But in our study that didn’t happen. We didn’t find any employment changes and instead we see Medicaid coverage rates dropping and more people without health insurance–usually because the process itself was confusing or beneficiaries didn’t even know about the new requirements,” said Benjamin Sommers, lead author of the study.
Additionally, the Commonwealth Fund reported that between 600,000 and 800,000 people could lose Medicaid coverage in nine states if proposed work requirements are fully implemented.
“Even if some people who lose coverage are able to reenroll later, coverage gaps will grow, potentially affecting health. This churning also drives up costs through higher administrative expenses and the greater costs of deferred care. The loss of Medicaid coverage also will shrink funding for health care, creating losses for safety-net hospitals and community health centers,“ wrote Leighton Ku and Erin Brantley.
While former House Speaker Tip O’Neill is credited for saying “all politics is local,” a similar phrase could be made for health care. The quality and affordability of health care is increasingly being determined by where someone lives.
This analysis from the Commonwealth Fund used “recently available data to assess every state and Washington, DC on more than 40 measures of health care access, quality, efficiency, health outcomes and disparities,” and developed trends to see how your state improved or declined. See the interactive chart »
NCCS is a long-time proponent of coordinated care, since far too many patients and survivors today bear almost all responsibility to coordinate and advocate for the care they need. This article provides an excellent overview of the needs and challenges to make care coordination more universal.
A new report from the Centers for Disease Control and Prevention (CDC) sheds more light on the impact of cancer on working adults.
“More than a quarter of adults aged 18 to 64 years reported they had trouble paying bills because of cancer, and over one-third reported psychological distress, according to a report from the CDC.”
The report points out that since the number of Americans with a history of cancer are is expected to rise, these type of numbers will likely increase as well in the years to come.
This CBS Sunday Morning News story looks at the troubling number of firefighters being diagnosed with cancer. “Since 2002, almost two out of every three firefighters who died in the line of duty died of cancer, according to the International Association of Fire Fighters.”
One theory for the cause is the types of toxins firefighters encounter due to changes in modern building materials. The article also points out the struggles many firefighters face to have their cancer care covered by workers compensation benefits.
A local news story in Ohio highlights another one of NCCS’ long-time priorities—cancer survivorship care plans. This is a great introduction to care plans which, when implemented correctly, can be an important resource for patients and their families to help with the transition from treatment to survivorship.
That’s the latest estimate in a new report from the American Cancer Society. Co-author of the report, K. Robin Yabroff, PhD, senior scientific director of health services research at ACS, said:
"People with a history of cancer have unique medical, psychosocial and economic needs that require proactive assessment and management by health care providers."
Dr. Yabroff shared more of her research on the costs and access to care in her presentation at NCCS’ Spring 2019 Cancer Policy Roundtable.
HEALTH CARE HIGHLIGHTS
Affordable Care Act (ACA) Update
Today marks one year since the Trump administration announced it would not defend the ACA and that the entire law should be struck down, including protections for pre-existing conditions. In just one month, oral arguments are scheduled in the Fifth Circuit Court of Appeals.
New research released last week at the annual American Society of Clinical Oncology (ASCO) meeting shows that the ACA’s Medicaid expansion reduced racial disparities in access to timely cancer treatment and led to earlier diagnoses and treatment of ovarian cancer.
“There’s increasing concern about greater disparities” between states that chose to expand Medicaid and those that did not, said Robin Yabroff, an epidemiologist at the American Cancer Society.
Otis Brawley, a Johns Hopkins oncologist and former chief medical and scientific officer at the cancer society, agreed. “We are moving from black-white disparities to Massachusetts versus Mississippi disparities,” he said.
Some of the most exciting news to come out of the ASCO annual conference last week includes this study out of UCLA:
“The drug actually improves overall survival, so women are living longer because of these drugs,” Burstein said. “Many of us were really pleased to see that the actual impact on survival was as robust and substantial as it was.”
Recently, we’ve seen an increasing debate within the cancer community regarding the definition of cancer “survivor.” The NCCS’ definition of a “survivor,” being from the moment of diagnosis and for the balance of life, including family, friends, and caregivers, has been at the center of this discussion. Ultimately, NCCS believes it is up to everyone to decide for themselves what language is most comfortable and applicable to their own personal experience.
The author, Doris Cardwell, is an NCCS Elevate Ambassador and has been an incredible advocate since being diagnosed with inflammatory breast cancer in 2007. She talks about the important role support groups can play in providing patients with information and reducing feelings of isolation.
NCCS Remembers Two Cancer Pioneers
NCCS joins the cancer community in remembering two pioneers in the fields of cancer research and cancer care.
The Cancer Letter
Dr. LaSalle Leffall was chair of the surgery department at Howard University for many years and served as the first African-American president of the American Cancer Society. He chaired the President’s Cancer Panel and served in a leadership role for many other cancer organizations. Dr. Wayne Frederick, president of Howard University, said of Dr. Leffall, “He was a surgeon par excellence, oncologist, medical educator, civic leader, and mentor to me and so many others.”
Read More »
Dr. Henry Lynch is considered by many to be the father of cancer genetics. By “painstakingly charting the spread of cancer through the branches of family trees and down through generations,” Dr. Lynch showed the hereditary implications of some forms of cancer. Thanks to his research, he is “credited with saving thousands of lives by championing screening practices that help physicians catch cancers early in their course, as well as preventive surgeries that in some cases forestall the disease’s onset altogether.”
HEALTH CARE HIGHLIGHTS
House Passes Health Care Bill
The biggest health care bill of this session made it out of the House and is headed to the Senate, after a party-line vote late Thursday. The bill contains proposals to lower prescription drug prices and to help shore up the Affordable Care Act (ACA), making it politically tricky.
It is unlikely that the bill will pass a Republican-controlled Senate. As Politico reports, “The move is likely to force most Republicans to sink the package and go on record as opposing efforts to control drug costs.”
Here’s what’s in the bill.
The drug pricing pieces are generally bipartisan and include provisions to:
- Address a backlog in the regulatory process that prevents more generic drugs from going on sale and bringing prices down.
- Ban pay-for-delay agreements to prevent manufacturers from paying generic manufacturers to delay the generic product from entering the market.
- Make it easier for generic manufactures to get the materials needed from brand-name drug makers to develop generic alternatives, known as the CREATES Act.
These policies are combined with ACA proposals including:
- Money for states to set up their own insurance marketplaces.
- Money to restore funding for ACA enrollment outreach and support, which was cut by the Trump administration.
- Repeal of the administration’s expansion of “junk plans,” known as short-term, limited-duration plans.
CHART OF THE WEEK
Kaiser Family Foundation
Thankfully, the Affordable Care Act (ACA) expanded health care coverage for millions of Americans across the country. However, as this Kaiser Family Foundation/LA Times survey points out, access to health care does not necessarily mean affordability in many cases, as nearly fifty percent of respondents with coverage and a chronic condition faced difficulties affording their care. Progress was made, but there is so much more that needs to be done to truly ensure quality, affordable health care. Read the entire article here »
Washington Post reporter and cancer survivor, Steven Petrow, shares his personal and moving experience with cancer and why he chooses to celebrate a “cancerversary.” Coined by NCCS years ago, the term really means whatever a patient, caregiver, or loved one decides is most comfortable for them. The article includes a quote from NCCS CEO Shelley Fuld Nasso.
American Cancer Society Cancer Action Network (ACS CAN)
NCCS opposed implementation of short-term, limited-duration health plans from the very moment they were proposed by HHS. This ACS CAN report provides further evidence of just how financially destructive they can be for anyone with these plans who are diagnosed with cancer. Offering these plans with limited to no transparency of the financial and health risks they pose is irresponsible.
Perspectives on Conversations About Costs of Cancer Care of Breast Cancer Survivors and Cancer Center Staff: A Qualitative Study
Annals of Internal Medicine
With the cost of cancer care, and health care in general, there is more and more discussion about the importance of providers having cost of care conversations with patients.
However, as this article highlights, “little formal guidance is available on how to conduct these sensitive conversations in ways that are acceptable to both patients and providers.” It is an important step that everyone involved is open to having these critical conversations, but now we need to figure out the actual steps to do so that is best for everyone.
Health IT Analytics
An interesting article that looks at the system-based intervention at the University of North Carolina Medical School that significantly reduced racial disparities for white and African American patients. Prior to this study, researchers looked at the underlying reasons why patients stop or delay treatment. Using that critical information, they then created this system that flagged issues for nurse navigators in a way that was most effective in reaching and communicating with patients.
Kaiser Health News
After a metastatic ovarian cancer diagnosis, a couple—who are both experts in palliative care—decides to pursue aggressive palliative care, forgoing treatments such as chemotherapy or radiation. It’s a choice made by fewer than 2% of patients facing the disease.
"I want to minimize the time I’m at the doctor. If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?"
HEALTH CARE HIGHLIGHTS
Kaiser/LA Times Health Insurance Survey
Kaiser Family Foundation and the Los Angeles Times released results of a poll of people with employer-based health insurance and found that overall, most people with employer coverage feel generally satisfied with their insurance, but those with high deductibles or chronic conditions report facing affordability challenges. Those individuals with higher deductibles were more likely to skip or postpone care or prescriptions because of the cost.
Read more about the study »
House Holds Hearing on Medicare-for-All
This week, the House Rules Committee held a hearing on Medicare-for-all, and according to several health policy reporters, it resulted in a substantive policy discussion that addressed benefits and shortcomings of a universal coverage plan. Larry Levitt from Kaiser Family Foundation summed up the message he heard about the hearing on Medicare-for-all, saying it would: “Guarantee universal coverage. People would lose their insurance plans, but not their health care. It would improve affordability by eliminating premiums and out-of-pocket costs. Taxes would go up.” Read more about the hearing »
Trump Admin Files Brief in ACA Lawsuit
The Trump Administration on Thursday filed its formal brief to the 5th U.S. Circuit Court of Appeals in New Orleans in the Affordable Care Act (ACA) lawsuit, declaring that the previous ruling that struck down the ACS in its entirety should be upheld. Such a decision by the courts could end health insurance for 21 million Americans and would eliminate protections for pre-existing conditions.
CHART OF THE WEEK
Congressional Budget Office (CBO)
The Congressional Budget Office (CBO) released a report this week analyzing federal subsidies for health insurance coverage for people under 65. They project that 30 million people will be uninsured in 2019, up 1 million from 2018 and 2 million more than in 2017. Further, they project that 35 million people will be uninsured by 2029. CBO attributes this increase to both the virtual elimination of the individual mandate and more people signing up for “junk insurance” the CBO doesn’t consider to be real health insurance.
The author, on active surveillance for prostate cancer, shares his opinion on the role and reach of the term “survivor.” He feels his experience to date doesn't warrant the term “survivor” and that the community must continue to examine how the term is applied.
Prior authorization obstacles unnecessarily delay patient access to cancer treatments, physician survey finds
American Society for Radiation Oncology (ASTRO)
The American Society for Radiation Oncology (ASTRO) commissioned a survey looking at how prior authorization impacts patients. They released their findings earlier this week on a conference call where NCCS CEO, Shelley Fuld Nasso, shared a patient perspective. The survey results showed that nearly all respondents said that their patients were delayed from treatment.
Amgen Breakaway Challenge Turns Walking, Running or Cycling Miles Into Support for Eight Independent Nonprofit Advocacy Organizations
This week, Amgen launched its Breakaway Challenge campaign to turn physical activity into support for fighting disease. "For a six-week period starting May 1 through June 12, 2019, Amgen will donate $1 dollar for every Breakaway Challenge mile completed by initiative participants, up to $400,000. The donations will be evenly distributed among the eight nonprofits."
NCCS has partnered with Amgen on their Breakaway from Cancer initiative since 2005 as part of the Amgen Tour of California bike race.
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.
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.
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.
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.
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
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.”
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.
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.
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.
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:
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
A useful graph that provides an overall snapshot of how health care costs increased compared to worker income from 2006 – 2016:
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.
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.”