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?
ACA Status Updates
HEALTH CARE HIGHLIGHTS
Ads Offering Bare-Bones Coverage are Everywhere
This Axios article highlights the growing trend of plans being advertised across the internet as “Trumpcare” plans. The problem? “Trumpcare doesn’t exist, and many of these advertised plans offer bare-bones coverage.”
"It's impossible to expect consumers to discern between the good guys and the con artists," said Sabrina Corlette, a health insurance researcher at Georgetown University. "And it's not the good guys that pop up on the first page of your Google search results."
As we’ve mentioned in recent Roundups, more stories are coming to light of people facing large medical bills because the comprehensive insurance they thought they were purchasing turned out to be “junk health insurance.”
California’s Surprise Billing Law
While progress on surprise billing legislation crept along in Congress, California moved forward with its own version. In the New York Times, Sarah Kliff and Margot Sanger-Katz reported on the implementation of the California law. Kliff and Sanger-Katz conclude that the law is providing protections to patients, pointing to data from two new studies. However, physicians strongly oppose the law and are warning Congress not to follow the example of California by adopting a benchmarking approach to surprise billing. With surprise billing increasingly in the news, this article provides a good overview of the topic and includes a look at the issues raised by surprise billing fixes.
CHART OF THE WEEK
There is increasing focus in the cancer community on “financial toxicity,” the term used to describe anxiety and other problems some patients face due to the high cost of health care. This graph, from the Commonwealth Fund, succinctly shows how respondents feel about their ability to afford the care they need if they became seriously ill. Even with some type of insurance, 38 percent of respondents reported little or no confidence in being able to afford care.
In an excerpt published by Time Magazine from her new book Radical: The Science, Culture, and History of Breast Cancer in America, breast cancer survivor Kate Pickert helps raise awareness about how little funding goes to metastatic breast cancer research.
She writes, “…some 40,000 American women still die from breast cancer every year. Despite the billions of dollars collected and spent on breast-cancer research over the past half-century, relatively little has been devoted to studying metastatic-breast-cancer patients or their particular forms of the disease.”
Many believe the 5th Circuit Court of Appeals’ decision on whether or not to invalidate the Affordable Care Act (ACA) could happen any day. As the nation awaits the decision, more evidence is showing the ACA’s impact on the health of Americans. As the Washington Post writes, “[There is] an emerging mosaic of evidence that, nearly a decade after it became one of the most polarizing health-care laws in U.S. history, the ACA is making some Americans healthier — and less likely to die.”
OncLive (Free registration required, no paywall)
There are so many factors when it comes to receiving treatment for cancer. Access to quality, affordable health care is one, while appropriate workplace accommodations are another, as Victoria Blinder, MD, MSc, points out in this article. “Workplace accommodations are necessary because financial toxicity during treatment may impair a patient’s ability to successfully fight cancer and retain employment over the long term.” If all patients are to receive high quality cancer care, regardless of race or socioeconomic status, then employers need to provide necessary accommodations for cancer patients.
Wajahat Ali, a contributor to the New York Times and CNN, shared the cancer diagnosis of his two-year-old daughter during a TED talk. This moving article shares his experience and how over 500 people, mostly strangers, volunteered to be liver donors.
HEALTH CARE HIGHLIGHTS
Tennessee Unveils First Medicaid Block Grant Proposal
Tennessee became the first state in the country to release a plan proposing to block grant its Medicaid program. Currently, the federal government pays each state “a certain percentage of the cost of care for anyone eligible for health coverage.” If changed to a block grant program, the federal government would “instead pay a state a lump sum each year while freeing it from many of Medicaid’s rules, including who must be allowed into the program and what health care is covered.” This would almost surely lead to benefit reductions and potentially impact the care of cancer patients who are on Medicaid.
American Lung Association: Do NOT Use E-cigarettes
The use of e-cigarettes, especially by teens and young adults, and the health concerns associated with their use have gained considerable media attention. Public scrutiny intensified even more after reports that at least seven people have died from vaping-related illnesses. The federal government is reviewing its policies, and two states, Michigan and New York, already took action to remove e-cigarettes from stores.
While some adults use e-cigarettes to help quit smoking, the number of teens who use e-cigarettes has increased sharply. The American Lung Association (ALA) issued a strong statement: “E-cigarettes are not safe and can cause irreversible lung damage and lung disease. No one should use e-cigarettes or any other tobacco product.”
Remembering Cokie Roberts
The journalism and cancer communities are both deeply saddened this week by the passing of Cokie Roberts. A pioneer for women in journalism, she was also a staunch, outspoken advocate for cancer patients and survivorship issues. A longtime friend of NCCS, and a cancer survivor herself, her passion and dedication to improving the lives of cancer patients and their families will be missed. We offer our condolences to her family and to her colleagues at ABC News and National Public Radio.
CHART OF THE WEEK
NCCS and our partner patient advocacy organizations conducted a survivorship survey and promoted it to our constituents. We were thrilled that 1,380 cancer survivors responded and grateful to those of you who took the time to do so. They reported a mix of financial, emotional, and physical concerns when navigating their survivorship. Review the detailed results here »
Wall Street Journal
Cancer survivor Laura Landro wrote this excellent piece highlighting how patients must navigate a multitude of physical and emotional survivorship issues. NCCS provided information for the piece, which mentions our survivorship survey results.
“When the treatment ends, the patients’ next journey is just beginning.”
This detailed and heartbreaking article illustrates the perils of purchasing short-term health insurance plans. Often referred to as “junk” insurance, most of these plans do not provide the comprehensive coverage for people if they suddenly face significant health care needs.
The Diaz family thought they were buying comprehensive health coverage for a lower cost than their previous plan, which was ACA-compliant. After emergency bypass surgery, they were left with a $244,000 bill.
The article concludes by noting:
National Public Radio (NPR)
Former NCI Office of Cancer Survivorship Director and current NCCS Board Member, Dr. Julia Rowland, was a guest on NPR’s program "On Point." She joined the author of the WSJ article mentioned above, Laura Landro, to discuss the myriad of issues cancer survivors face. You can listen to this informative discussion and find links to more reading here.
The episode is also available from the "On Point" podcast, which you can find on your favorite podcast app.
NCCS Elevate Ambassador Doris Cardwell shares some of her experiences and advice as an inflammatory breast cancer survivor.
She writes, “If you are a survivor and need help dealing with all that you see, please hear me: I am a strong, independent, and sometimes sassy woman. I have walked through many difficult things in my life. Yet, it took me years to realize that seeking help takes more strength and courage than not.”
Along with surprise medical bills gaining more scrutiny, so has the behavior of some hospitals for aggressively filing lawsuits against patients. It is this type of reporting that shines a spotlight on these practices and helps change behavior.
HEALTH CARE HIGHLIGHTS
What Pres. Trump's Health Care Plan Might Include
In August, we noted that President Trump and other members of his administration mentioned that they intend to unveil a substantial health care plan later this month. As we await the details of that plan, we wanted to share this Kaiser Health News article that examines what such a plan may, or may not, include.
Congress returns to Washington next week, after the August recess. We will monitor and report on Congressional action on policy issues, including surprise medical billing, drug pricing, and more.
CHART OF THE WEEK
The Commonwealth Fund
A recent analysis by the Commonwealth Fund looked at the impact of the Affordable Care Act (ACA) using data from the American Community Survey. Researchers looked particularly at rates of insured vs. uninsured, and ethnic and racial disparities. Their conclusion is that the ACA helped significantly reduce rates of uninsured and reduced racial disparities:
With nearly 1.8 million new cancer diagnoses a year, and millions of cancer survivors across the country, the impact of the ACA on cancer care cannot be understated.
A relatively small study at the Feinberg School of Medicine at Northwestern University looked at how often doctors make recommendations to patients about healthy lifestyles. Researchers surveyed 91 physicians: 30 primary care physicians; 30 oncologists; and 31 specialists (urologists, gynecologists, and dermatologists). While 90% of primary care doctors reported “recommending health promotion such as weight loss and smoking cessation to at least some survivors of cancer,” only 26.7% of oncologists and 9.7% of specialists said they do. The study adds an interesting perspective to the discussion about the role primary care doctors play in long-term survivorship care, and ongoing gaps in overall cancer care.
In an opinion piece in The Scientist, David Rubensen argues that the National Cancer Institute (NCI) designated cancer center program “has evolved into a nationwide branding exercise, mostly signifying grant-writing endurance and adherence to metrics that skew scientific priorities and place centers in organizational straight jackets.” He suggests questions that he believes should be addressed about the future of the program.
Oncology Nursing News
We often hear how fear of cancer recurrence affects cancer survivors after treatment, and fear of recurrence was the topic of one of our most popular webinars. Here, a cancer survivor and oncology nurse shares her experience facing recurrence anxiety and provides some ideas to help mitigate its impact.
New York Times
New York Times reporter Rod Nordland shares his personal experience discovering and navigating a brain tumor diagnosis while on assignment in New Delhi, India.
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.