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
Cancer Care Planning and Communications Act Introduced in the House
On July 23, the Cancer Care Planning and Communications Act (CCPCA), H.R. 3835, was reintroduced in the House of Representatives. The bill is sponsored by Rep. Mark DeSaulnier (D-CA) and Rep. Buddy Carter (R-GA), co-chairs of the Congressional Cancer Survivors Caucus. The CCPCA is NCCS’ top legislative priority as it would increase access to comprehensive cancer care planning for millions of Medicare beneficiaries. If implemented in Medicare, it is our hope that private insurers would adopt similar measures.
You can find more information about the CCPCA here. NCCS also recently hosted a webinar and created a toolkit about how to meet with your Members of Congress during the August recess and advocate for the CCPCA and other cancer care issues. Check out the webinar and toolkit »
Drug Importation Plan Announced
The Department of Health and Human Services (HHS) announced Wednesday an action plan for the “safe importation” of drugs. The plan has two parts. First, HHS would undertake a rulemaking process to establish a system for states and other entities to engage in drug importation from Canada. The second part of the effort would be to establish a pathway at the Food and Drug Administration (FDA) for manufacturers to import versions of drugs that they currently sell in foreign countries. Although many in the cancer community believe importation would not have a major impact on cancer drug access or pricing, the Trump Administration specifically mentions “cancer” in the second part of the plan.
To be clear, this is only the first step in a lengthy process, and NCCS will continue to monitor and report on any further developments.
Senate Drug Pricing Package
Last week, the Senate Finance Committee approved a drug pricing bill by a vote of 19 to 9. However, the bill continues to face several serious challenges according to several reports. Republican Senators expressed concerns about the bill. The pharmaceutical industry lobbied aggressively against it on Capitol Hill this week. Democrats pledged that they would agree to floor action on the bill only if there is a vote on protecting pre-existing conditions and a vote on allowing Medicare to negotiate drug prices during consideration of the bill.
Needless to say, the bill’s fate is far from certain. Here is a Washington Post article with additional background and a Kaiser Health News report that focuses on the political challenges facing the package.
CHART OF THE WEEK
To be fair, the challenges rural hospitals and providers face began well before the passage of the Affordable Care Act (ACA). But as this map and the associated research shows, refusing the ACA hasn’t helped matters.
Kaiser Health News
Earlier this week, the Trump administration released a proposed new rule “that would provide consumers far more detail about the actual prices hospitals charge insurers.” There is ongoing debate regarding to what degree patients “shop around” for health care as consumers do for other goods and services. That said, more transparency to give patients—as well as employers and insurers for that matter—more information regarding costs could be a welcome step forward.
This article looks at another drug pricing bill in the Senate, sponsored by Sens. Chris Van Hollen (D-MD) and Rick Scott (R-FL). As Vox.com explains it:
The bill only applies to new drugs, and not those currently on the market. With so much focus on this issue in Congress, it will be interesting to see if these and other drug pricing bills gain traction and get voted on.
The author shares her personal experience with cancer and how her journey motivates her, even more than thirty years later, to be a patient advocate.
We often highlight how critically important the Affordable Care Act (ACA) is to cancer patients and their families. This article discusses a recent study that shows the ACA’s impact on mortality more generally, saying:
HEALTH CARE HIGHLIGHTS
ACA Lawsuit: Appeals Court Hears Arguments
Last week, a three-judge panel of the 5th Circuit Court of Appeals in New Orleans heard arguments in the Texas v. United States case that has the potential to invalidate the Affordable Care Act (ACA). Two judges asked pointed questions that seemed sympathetic to the case against the ACA. While this is disheartening for cancer patients who rely so heavily on the ACA, observers from Kaiser Health News and others cautioned that a long road remains ahead, and that the Supreme Court will likely hear the case eventually.
Federal Judge Blocks Rule on Drug Pricing in TV Ads
Last week, a federal judge blocked the Trump administration’s attempt to require pharmaceutical companies to include the price of drugs in direct-to-consumer television ads. U.S. District Judge Amit Mehta wrote in his decision:
The administration’s next steps are unclear.
HHS Pulls Proposed Medicare Drug Rebate Rule
The administration pulled a proposal to change the rules that govern the rebates pharmaceutical companies pay to pharmacy benefit managers. As STAT summed it up: “Drug manufacturers had largely supported it, while middlemen known as pharmacy benefit managers and insurers were vocally opposed.”
An analysis of National Health Interview Survey data estimates “that nearly 5.4 million cancer survivors struggle with chronic pain, which translates to about 35 percent of all cancer survivors in the United States.” Such insights into the pain that cancer survivors experience are especially relevant in the context of the current opioid crisis in America.
This in-depth article explains the findings of a large study on triple-negative breast cancer. Researchers found that non-Hispanic black women and younger women are at higher risk of developing triple-negative breast cancer.
Kaiser Health News
Another example of an all too familiar trend — a rural hospital closes forcing patients to travel long distances to receive the care they need. The article looks at the impact on cancer patients in particular, as well as the community at large, when a local hospital like this shuts down. “Rural cancer patients typically spend 66% more time traveling each way to treatment than those who live in more urban areas, according to a recent national survey by ASCO.”
American Association for Cancer Research (AACR) Blog
Hillary Stires, PhD, and a NCCS Elevate Ambassador, shares the personal experiences that influenced her shift from a career focused in cancer research to a career focused in health policy and patient interaction.
Billionaire Sean Parker is nerding out on cancer research. Science has never seen anyone quite like him
An interesting article that looks at how billionaire Sean Parker, known as an innovator and disruptor in Silicon Valley, is bringing his approach and money to cancer immunotherapy.
“While ‘medicine in general can be so staid and cautious,’ said D.A. Wallach, a life sciences investor who has known Parker since around 2011, ‘you’ve got in Sean a billionaire who doesn’t need to answer to anyone, who’s incredibly intellectually engaged with this science, and who has believed for a long time that he knows what the answer’s going to be.’”
A Kaiser Health News (KHN) Podcast
This podcast provides a good summary of the legal threat facing the ACA due to a lower court ruling last December, and takeaways from the questioning before the 5th Circuit Court of Appeals discussed above. “The legal challenge to the ACA by conservative states is a real threat to the law, but the case could still be resolved in a wide variety of ways. It is likely, however, to be appealed to the Supreme Court at some point.”
Los Angeles Times
The Trump administration argues two different narratives about the ACA in different court cases. This article highlights how eliminating the individual mandate didn’t severely affect insurance enrollment rates. “In an insurance market that guarantees access to people with pre-existing conditions, there need to be both carrots and sticks to encourage healthy people to sign up for coverage and keep the market stable. It turns out, if the carrot is large enough, the stick is less important.”
Protections for Pre-Existing Conditions and Coverage Standards at Risk
Washington, D.C.—Patient groups are urging the Fifth Circuit Court of Appeals to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments today in the case Texas v. United States. The case is being appealed after a lower court ruling that the entire health care law should be struck down because Congress repealed the individual mandate’s tax penalty. The case was brought by 20 states and is led by the Texas Attorney General.
The patient groups filed an amicus brief with the Court in April arguing the law was intended to help protect patients with pre-existing conditions, and Congress’s rejection of efforts to repeal or replace the Affordable Care Act (ACA) confirms that intent.
Following is the groups’ joint statement:
“Millions of Americans rely on the critical patient protections included in the ACA to access, afford and retain meaningful health coverage that is essential for their wellbeing. This includes people who suffer from serious, acute and chronic health conditions, like cancer, heart and lung disease, chronic neurological diseases, diabetes, pregnancy, and mental health and substance use disorders.
“If allowed to stand, the lower court’s ruling would once again mean people could be charged more or denied coverage based on their health history. Insurance plans could impose arbitrary annual and lifetime limits on patients’ coverage and could exclude whole categories of care—like prescription drugs—from their plans. Striking down the law would also jeopardize the tax credits 8 million Americans rely on to afford health insurance on the individual market, and could result in millions of others being dropped from Medicaid should states decide to rescind expanded coverage.
“The consequences of invalidating the patient protections included in the ACA would be profound and immediate. An estimated 27 million people could lose their health coverage by next year, according to the Congressional Budget Office.
“We urge the court to keep people with chronic and serious conditions top of mind when they hear arguments today and to respect the will of Congress by preserving health care for millions of Americans.”
The groups on the brief include the American Cancer Society, American Cancer Society Cancer Action Network, American Diabetes Association, American Heart Association, American Lung Association, Crohn’s & Colitis Foundation, Cystic Fibrosis Foundation, Epilepsy Foundation, Hemophilia Federation of America, Leukemia & Lymphoma Society, March of Dimes, National Alliance on Mental Illness, National Coalition for Cancer Survivorship, National Hemophilia Foundation, National Multiple Sclerosis Society and The Kennedy Forum.
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.