Affordable Care Act Resources

Affordable Care Act - #ProtectOurCare

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.

Current 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?

Contact/Meet Your Members of Congress
Whether you attend a town hall event in your district, set up an in-person meeting with the district office, or call your Member, every effort is vital in saving our care. Did you know it takes on average only SEVEN phone calls for Members of Congress to flag an issue?

Take Action

Call Your Senators

NCCS has set up a toll-free number so you can easily call and be directly connected to the offices of your Senators. Call your Senators at (844) 257-6227 and urge them to oppose repeal of the medical expense deduction and the individual mandate.  We must work on constructive solutions that improve our health care system for all Americans.

Meet Your Members of Congress In Person

Meet with your Members of Congress at district events. Find a town hall meeting near you »

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

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

ACA Status Updates

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »


Comment Period Closed for Trump Drug Pricing Plan

Comments for the Department of Health and Human Services’ (HHS) drug pricing proposal were due this week. The plan, introduced by the Trump administration, outlined proposals seeking to increase competition, reduce out-of-pocket costs and incentivize better negotiations for lower drug prices. NCCS joined with other organizations of the Cancer Leadership Council (CLC) to provide comments regarding the blueprint, called “American Patients First.”

Sent to HHS Secretary Alex Azar, the letter outlines the groups’ concerns and asks questions of HHS about the plan’s recommendations, with the hope of ensuring that patients’ physical and financial health are protected and considered a top priority.

We do not support changes in Part D formulary standards. Since the enactment of Medicare Part D and its implementation, cancer advocates have strongly supported the protected classes policy, which includes antineoplastics, as well as expansive formulary approaches.

Elimination of the protected classes policy and the implementation of restrictive formularies with aggressive formulary management tools may serve to limit timely access to cancer drugs.

CLC Letter to HHS Secretary Azar on Drug Pricing Blueprint

The letter also outlined concerns for cancer patients regarding moving Medicare Part B drugs to Medicare Part D, posing the questions:

Will Part B coverage standards (for approved indications of cancer drugs and certain off-label uses) apply in the Part B to Part D shift? Will the payment system of Part B apply if drugs are shifted from B to D?

Hospitals Lose Suit Against 340B Cuts in Appeals Court

The U.S. Court of Appeals for the District of Columbia Circuit unanimously upheld a ruling in a case brought by the American Hospital Association and several other hospitals to prevent HHS from cutting $1.6 billion from the 340B drug discount program. The initial lawsuit was rejected last year after a federal judge ruled that the lawsuit was filed before the hospital plaintiffs experienced the cuts proposed by the Trump administration.

Hospitals that participate in the program receive higher reimbursement for 340B approved drugs through Medicare Part B. The cuts issued by HHS will reduce payments to 340B hospitals by 27 percent, a move that hospital groups say they will continue to fight. This ruling is the latest in the Trump administration’s push to reform the drug rebate system.

FDA Releases Guidelines on Speeding Development of Biosimilar Products

The Food and Drug Administration (FDA) announced earlier this week that it will take steps to speed up the development of biosimilars, generic versions of biologic drugs, by allowing for greater competition. This draft guidance is the latest in FDA Commissioner Scott Gottlieb’s goal to roll back regulations on the production of biosimilars in the United States, including the approval process of these drugs. Last month, the agency had withdrawn a draft guidance that outlined suggestions to companies producing biosimilars on how to evaluate analytical similarity between the two versions of drugs, citing the need for updated evaluation methods and greater flexibility for companies involved in developing biosimilars.

U.S. Death rates from liver cancer increase by over 40%

The Centers for Disease Control and Prevention (CDC) reported that liver cancer death rates shot up by 43 percent, placing liver cancer from the ninth leading cause of cancer death to the sixth. Men were more than twice as likely to die from liver cancer compared to women. “Obesity is a big risk factor that often goes overlooked,” said Dr. Sam G. Pappas, chief of the Division of Surgical Oncology at Rush University Medical Center.


Two charts from KFF highlight two important facts regarding the recently announced cuts to ACA navigator funding:

1) "The number of new marketplace participants was lower in 2018 compared to 2017."
2) Consumers seeking help "had limited understanding of the eligibility and enrollment process, or of health insurance, and lacked confidence to apply on their own."

Source: Kaiser Family Foundation, "Data Note: Further Reductions in Navigator Funding for Federal Marketplace States."


KFF on Funding Cuts for Federal Marketplace Navigators

Kaiser Family Foundation

Kaiser Family Foundation released a brief reviewing data CMS presented as justification for their decision to once again reduce funding for navigators, a marketplace-funded program created under the Obama administration. The navigators encourage those eligible for marketplace and Medicaid coverage to sign up through education, outreach, and enrollment guidance.

While CMS argued that knowledge on how to enroll in the marketplace is now wide-spread, KFF counters CMS claims by stating that millions of Americans lose their coverage each year and that understanding how enrollment works will continue to remain complicated, especially for low-income Americans and those without proper access to improved health literacy. The brief also highlights how data provided by CMS did not fully capture the extent of assistance navigators provided to beneficiaries. Read More »

Health Insurers Are Vacuuming Up Details About You—And It Could Raise Your Rates

Via National Public Radio (NPR)

This NPR article details how insurers and data brokers work together to collect personal details about millions of people in this country and how they utilize “lifestyle” data to set prices for health care plans. The information provided to insurers can range from your socioeconomic status to what you posted to social media last night. Health insurance companies can use these data to maximize their profits, but at the cost of health privacy for many. Diminishing privacy as well as the issue of poor inferences from the data insurers collects is an ongoing debate, and something that will not be resolved anytime soon. This information could become exponentially more harmful if efforts to repeal pre-existing condition protections are successful.
Read More »

Delays and Denials in Coverage for CAR-T Cancer Therapies


The process and costs towards coverage for CAR-T Cancer therapies is under scrutiny. Astronomical costs for therapy in addition to confusing and time-consuming approval processes have left many health care providers frustrated and patients overburdened, both financially and mentally. Private insurers are not the only ones who have received numerous criticisms in how they cover patients. Patients who rely on Medicaid and Medicare have also faced obstacles in ensuring adequate coverage. Some Medicaid programs do not provide coverage for the gene therapy. For Medicare, issues with reimbursement rates may further exacerbate problems with outpatient care for cancer patients. Read More »

Related Posts

NCCS Joins Cancer Leadership Council Comment Letter Regarding the Drug Pricing Blueprint “American Patients First”

Health Care Roundup: CMS Halts ACA Risk Payments, Slashes Navigator Funding; Long-Term Outcomes for Young Survivors; Drug Pricing; More

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »


CMS Halts ACA Risk-Adjustment Payments and Cuts Funding for Health Coverage Navigators

This week, the Centers for Medicare and Medicaid Services (CMS) announced two new actions that could harm the Affordable Care Act (ACA) marketplaces and enrollment. Last Saturday, CMS announced that it would halt the risk-adjustment program, including $10 billion in payments due to insurers for costs incurred last year. The risk-adjustment program spreads risk of high-cost enrollees across insurance companies, and is a critical provision of the ACA to ensure everyone can get health care coverage regardless of pre-existing conditions. Experts predict that eliminating the payments will increase uncertainty in the markets, raise premiums, and increase costs for the federal government.

Then on Tuesday, CMS announced that it will once again slash funding for navigators to assist in the open enrollment period and will encourage navigators to promote plans outside the ACA marketplace, including association health plans and short-term plans. Funding for navigators this year will be $10 million, down from $36.8 million last year, which was down from $62.5 million the previous year.

Dania Palanker and JoAnn Volk wrote in a Commonwealth Fund blog post:

“Suspending the risk-adjustment program adds more uncertainty in markets that are already facing numerous federal policy changes. Insurers are proposing to raise rates for 2019 to account for lower enrollment, particularly among relatively healthy individuals, thanks to the elimination of the individual mandate penalty, changes to association health plans, and expansion of short-term health plans. Adding to the market challenges, the administration has slashed navigator funding for the year ahead. If CMS does not make risk-adjustment payments soon, there may be major disruption in the individual and small-group markets.


Source: "Where the money stands in ACA risk adjustment ", from
(Click tweet to see chart full size)


What Pfizer, Trump, and consumers got out of a surprising deal—and what they didn’t

Via STAT News

This week, after pharmaceutical company Pfizer announced its mid-year price increases, President Trump blasted the company in a tweet, prompting further discussion between the Trump Administration and the company. Pfizer subsequently agreed to roll back price increases, at least temporarily. What does this mean for consumers? According to this STAT news piece, “None of it might make any difference in the amount they pay for their prescription drugs, analysts say.” Read More »

Outrageous or Overblown? HHS Announces Another Round of ACA Navigator Funding Cuts

Via Kaiser Health News

What will the Trump Administration’s cuts to navigator funding mean? While some say the decision amounts to sabotage, others say that it is unlikely to be a big factor in enrollment, as evidence by the strong enrollment for 2018, despite cuts to funding for advertising and enrollment assistance. Read More »

A Closer Look at Long-Term Outcomes in Young Cancer Survivors

Via Cure Magazine

Recent data published in the journal Cancer show that the majority of adolescent and young adult (AYA) cancer survivors, diagnosed between the ages of 15 and 39, live past the five-year mark, highlighting the need for long-term survivorship care. Read More »

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »


Justifiably, most of the country’s attention has recently focused on a heartbreaking and far more urgent issue.  It was in this media and political whirlwind that several health care developments flew largely under the radar this week that could have widespread consequences for millions of patients.

Association Health Plans Rule Finalized

The association health plans (AHP) rule was finalized by the Labor Department as the Trump administration continues its efforts to strike down the Affordable Care Act (ACA) through regulatory action. While marketed as a way for small businesses and trade groups to sell cheaper coverage, the rule allows plans NOT to cover the ACA’s 10 “essential health benefits.” NCCS joined with the Cancer Leadership Council and other patient advocacy organizations in a statement opposing the rule, saying:

“These plans will result in a segmentation of the insurance market and will leave many cancer survivors – who have a pre-existing condition from the day of diagnosis – scrambling to find affordable and adequate insurance offerings in the individual market.”

Worth highlighting is the Washington Post’s “Health 202”:

“The L.A. Times found in a recent analysis that more than 95 percent of health-care groups that filed comments on the proposed rule expressed serious concern or opposed it. Furthermore, not even one group representing patients or industry submitted comments in support of the association plan rule, the Times found. ’Basically anybody who knows anything about health care is opposed to these proposals,’ Sandy Praeger, Kansas’s Republican former state insurance regulator told the Times. ‘It’s amazing.’”

ACA Repeal Proposal

Conservative groups revealed another proposal in a further attempt to repeal the ACA.  The latest proposal is very similar to the previous ones, especially in the harm it would do to millions of Americans.  As laid out by the Center for Budget and Policy Priorities (CBPP), it would “cause millions to lose health coverage, end Medicaid expansion, and allow states to eliminate or weaken protections for people with pre-existing conditions.” It also would hand more control over health care spending to states, a move endorsed at the press conference to introduce the proposal by Kentucky Governor Matt Bevin and Mississippi Governor Phil Bryant.

However, as Sarah Lueck with CBPP points out, Kentucky ranks 42nd and Mississippi ranks 51st in overall health system performance in a Commonwealth Fund scorecard. While the current consensus is that this has little chance of passing, it is important to know that this is out there and that groups and individuals haven’t given up hope to repeal the ACA.

GOP 2019 Budget Proposal Unveiled

If you believe the phrase “actions speak louder than words,” then the House GOP budget unveiled this week spoke loud and clear. As Bloomberg reported, the budget proposal was meant “to send a message to [House GOP] core supporters that repealing Obamacare, cutting taxes and partially privatizing Medicare remain high on their agenda.” Namely, it gives the same reconciliation authority as last year “to let congressional committees try once again to repeal the Affordable Care Act and enact a new tax law.” Again, this doesn’t have much chance of passing before the mid-term elections, but the budget process could be used in a lame-duck session AFTER the election to pass ACA repeal legislation.


Source: "The big picture: Why health care costs so much", from
(Click chart to see full size) created a state-by-state chart of average monthly premiums for ACA marketplace plans over time, 2014-2018.


For Survivors of Childhood Cancer, Walk

Via New York Times

There are many studies and papers looking at the benefits of low to moderate exercise for cancer patients and survivors. This article highlights the benefits of regular exercise, “such as walking for an hour, improved long-term survival in those who had childhood cancers.” Read More »

Why the Medical Research Grant System Could Be Costing Us Great Ideas

Via New York Times

When we advocate for funding for the National Institutes of Health (NIH), we assume that the peer review system is outstanding and that NIH funds will be used well as a result of this system. We have in the past called NIH peer review the “gold standard” for peer review.

However, this opinion piece about NIH peer review by Aaron Carroll in the New York Times offers a different perspective. He concludes that the system favors low-risk proposals and proposals from older scientists and white men, suggesting that we may be missing out on funding good science because of the biases of the system. He offers some proposed reforms of the peer review system as well.
Read More »

Bipartisan group of governors denounces Trump move on pre-existing conditions

Via The Hill

It is important to point out that not all governors agree with positions stated above by the governors of Kentucky and Mississippi.  A bipartisan group of nine governors issued a statement that “called on the Trump administration to reverse its decision to argue in court that ObamaCare’s pre-existing condition protections should be overturned.”  The statement said in part, “The administration’s disappointing decision to no longer defend this provision of federal law threatens health care coverage for many in our states with pre-existing conditions and adds uncertainty and higher costs for Americans who purchase their own health insurance.” Read More »

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »


ACA Pre-Existing Conditions Protections are at Risk

As we reported last week, 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. In fact, the DoJ is breaking with long-held legal precedent to defend laws passed by Congress. Instead, the DoJ has decided to support the legal argument of several attorneys general from GOP-led states who suggest that not only the individual mandate, but also the guaranteed issue and community rating provisions of ACA are unconstitutional. 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. Read more about the details of the lawsuit at

Carolyn Y. Johnson of the Washington Post says the ACA lawsuit could jeopardize 52 million Americans’ access to health care:

According to a 2016 analysis by the Kaiser Family Foundation, approximately 52 million Americans under the age of 65 could find their access to health insurance at risk because of a wide range of preexisting conditions, from diabetes to cancer to pregnancy. Health insurers have for years been raising premiums, complaining about uncertainty and withdrawing from the business of selling individual insurance plans, and more changes could further destabilize the market.

“It would be essentially a return to what the individual market looked like before the ACA, where insurers would require applicants to fill out long questionnaires about their medical histories, and make decisions based on people’s health and how much to charge,” said Larry Levitt, a senior vice president at the Kaiser Family Foundation. “Now we’re in the situation where very sick people have gotten insurance, and so changing the rules means taking coverage away from people who genuinely need it.”

As the Wall Street Journal points out, this threat to pre-existing conditions also applies to individuals who have employer coverage. “If the courts toss some ACA provisions linked to the insurance-coverage mandate, elements of the requirements that also apply to employer plans would likely be halted or reversed as well, analysts said.” Additionally, “Employers would again be able to impose lengthy waiting periods for health coverage on new hires…and employers could also opt not to cover a new hire’s specific health problem, like cancer, for up to a year even if they provide them insurance.”

NCCS will continue to monitor this situation and provide further updates as they become available.


Trump gives Democrats a big health care opening for the midterms


One of the biggest reasons ACA repeal efforts failed in 2017 was because of threats to pre-existing condition protections. As noted above, millions of Americans have one form or another of a pre-existing condition and now understand what health coverage is like when those conditions can’t be used against patients. Actively trying to take that away could once again prove difficult. Axios points out:

Protections for people with pre-existing conditions are hugely popular, and the administration may have handed Democrats their strongest health care weapon yet—because now they can make the case that the administration has gone to court to take away protections for people with pre-existing medical conditions. The case is also likely to drag on, so it could be the political gift that keeps on giving through 2020, even if it is eventually thrown out.

Read More »

The Search for Cancer Treatment Beyond Mutant-Hunting

Via New York Times

Siddartha Mukherjee, author of The Emperor of All Maladies: A Biography of Cancer, argues in her New York Times piece that the reinvention of cancer therapy needs time, patience and diligence—and most importantly, skepticism. “By narrowing our definition of precision medicine too much, we almost narrowed our ambition to deliver precise, thoughtful therapy — or, at times, no therapy — to our patients. It would be a shame to view cancer through such narrow lenses again.” Read More »

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »


Administration Action Threatens Coverage for People with Pre-existing Conditions

In a court filing yesterday, the Department of Justice (DOJ) stated that it would not defend key provisions of the Affordable Care Act in a lawsuit brought by Texas and several other states. One provision is the individual mandate, which was repealed in the tax bill passed by Congress and signed into law last December. Also at issue in the case is coverage and premiums for people with pre-existing conditions. In a blog post for The Commonwealth Fund, Timothy Jost explains the Trump administration’s action and the potential consequences for people with pre-existing conditions:

If the judge buys the administration’s argument, and if his ruling is upheld on appeal, 52 million Americans with preexisting conditions could face denial of coverage or higher premiums. The administration’s argument would also allow insurers to charge women, older people, and people in certain occupations higher premiums. This policy change would jeopardize coverage not just for consumers in the individual market, but also people with preexisting conditions who have employer-sponsored coverage. If these people lost or left their jobs, they may not be able to get individual market coverage.

NCCS will continue to monitor the situation and share ways that advocates can weigh in on this important issue for cancer survivors.

HHS Won’t Prohibit “Silver Loading” on ACA Plans

When President Trump stopped cost-sharing reduction payments to insurers, they began a practice known as “silver loading.” The insurers targeted their premium price increases into the silver-level plans of the Affordable Care Act. Since the silver plans are the benchmarks for determining subsidies, silver loading resulted in higher subsidies for people who chose those plans while leaving bronze and gold plans with minimal increases. This practice helped consumers but cost the federal government more in subsidy payments. HHS Secretary Alex Azar this week confirmed during a congressional committee hearing that the administration would not seek to stop insurers from doing this in 2019, but refused to confirm if future efforts to stop the practice would or would not be pursued.
More on Kaiser Health News »

Health Care Taking Center Stage Again?

Since last year’s bruising fight in Congress to repeal the Affordable Care Act and until last night’s DOJ decision, health care has largely stayed out of the spotlight.  As Vox's Dylan Scott puts it:

Repeal was a clean, simple, and big story. “Sabotage” — in the form of cutting CSRs, expanding non-Obamacare insurance, and slashing outreach — is more nebulous. People still care about health care, but they aren't hearing about it in the news every day anymore. The threat on health care can feel less real, even if sabotage is having very concrete effects.

However, trends are emerging that may bring health care back into the national spotlight, especially in light of recent developments regarding the legal challenge in Texas.  Axios points out “prescription drug costs are the issue du jour. Premiums for ACA coverage are also skyrocketing. Medicare’s financial footing is getting weaker.” More and more people are not just hearing about health care issues like last year, they’re starting to feel the impacts this year and could be a factor in the upcoming midterm elections. “This will be the first midterm in a decade that Obamacare will not be the issue that unites and energizes Republicans.”


Revised Michigan Medicaid Proposal Would Still Reduce Coverage and Access to Care

Via Center on Budget and Policy Priorities

While we’re seeing some encouraging trends with several states moving towards Medicaid expansion, there are also some very concerning examples. Michigan is near passage of bill that would add work requirements for Medicaid coverage. By one estimate, 54,000 Michiganders would lose their health care coverage. Further, the “new bill puts Michigan’s entire Medicaid expansion under the Affordable Care Act (ACA) — covering 670,000 people — at risk. That’s because Michigan would be required to end its expansion if the federal Centers for Medicare & Medicaid Services (CMS) doesn’t approve an additional waiver that raises premiums on some Medicaid beneficiaries.”
Read More »

Live Like Lola

Via Washington Post

The Washington Post, through words and photos, shares the powerful story of Lola Muñoz. A young girl facing diffuse intrinsic pontine gliomas (DIPG), an aggressive brain cancer. “For nearly a year and a half, photojournalist Moriah Ratner followed Lola and the Muñoz family on a journey marked by pain as well as laughter, fear as well as joy, anguish and finally peace. Her camera captured a girl dealing with inevitable loss while trying resolutely to live.”
Read More »

Op-Ed: “The ‘cruel joke’ of compassionate use and right to try: Pharma companies don’t have to comply”

Via STAT News

The father of a child with a rare-disease provides a blunt perspective on compassionate use and right to try. He points out that: “While the FDA has a compassionate use program to allow people access to experimental drugs, it can’t compel a company to provide those drugs. The newly signed ‘right-to-try’ law doesn’t either.”
Read More »

In order to bring you the latest cancer-related health care policy and news, we at NCCS are combining our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our content more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »


Trump Administration Promotes a Drug Pricing Plan

On Friday, May 11, 2018, President Trump announced a drug pricing blueprint to address prescription drug prices. Initial media coverage of the plan suggested that the blueprint failed to honor the President’s campaign commitment to negotiation of drug prices. Overall, the press and policymaker reaction to the plan was muted, with some suggesting that the plan would have limited impact. Although details of the plan are still unclear, certain elements of the plan may have an impact on how cancer patients receive and pay for their prescription drugs. There may be changes in the coverage and payment for both intravenous, physician-administered cancer drugs and oral, self-administered cancer therapies. The public has 60 days to comment on the drug pricing plan through the “Request for Information” released by the Trump Administration. NCCS will evaluate the direct patient impact of the plan provisions that relate to coverage and payment for cancer drugs and will outline the issues of concern to cancer patients.

Insurance Premium Increases for 2019, the Causes, and Efforts to Lower Them

Insurers have begun to project next year’s premiums for plans offered through the Affordable Care Act (ACA) marketplaces. The premiums that have been announced to date for 2019 are significant increases over premiums in 2018. Insurance companies signaled that adjustments to the premiums are possible if they receive relief from the costs associated with insuring expensive patients. Members of Congress are blaming each other for the premium increases. Congressional Democrats contend that the actions of the Trump Administration to undermine the ACA enrollment process and to advance short-term, limited-duration plans will further undermine the ACA marketplaces. The Trump Administration and some Congressional Republicans maintain that the ACA is fundamentally flawed and that repeal is still necessary. The Hill has reported that rate increases have reignited the “Obamacare war.” In fact, Senator Lindsay Graham is reportedly working on a “new” Obamacare repeal bill.

Short-Term Plans: Enrollment will be Significant and Negative Effects on Marketplace will be Substantial

The Trump Administration’s proposed expansion of short-term plans will reportedly be finalized by June 2018. These plans, sometimes called “skinny” or even “junk” plans, will not be required to meet ACA standards for benefits, cost-sharing, guaranteed issue, and pre-existing condition protections. The Administration has touted these plans as an affordable insurance option for healthy adults and has suggested that uptake of the plans will be slow and the impact on the ACA health insurance marketplaces will be modest.

This week, the Actuary of the Centers for Medicare & Medicaid Services (CMS), who is independent from the CMS leadership,  projected that 1.8 million Americans would elect short-term coverage, with 800,000 coming from the ACA marketplace. This projection means that almost 2 million Americans will have only short-term coverage of limited scope and significant cost-sharing burden and that the diversion of hundreds of thousands from the marketplace will destabilize the ACA marketplace. For cancer patients who rely on ACA coverage, premiums will increase, potentially substantially, if they are not eligible for premium subsidies. The expansion of short-term plans will also cost the federal government $38.7 billion over ten years with increased expenditures for premium subsidies, the CMS Actuary reported.



A Kaiser Family Foundation report entitled, “Implications of the ACA Medicaid Expansion: A Look at the Data and Evidence,” reported that “Medicaid expansion states experienced significant coverage gains and reductions in uninsured rates compared to non-expansion states for the low-income population broadly.”


Healthy America, a big new plan to combine Medicaid and Obamacare, explained


The Urban Institute, a think tank in Washington, DC, has acknowledged the deep divide about the ACA and the renewed push to repeal the ACA. They have proposed an alternative that protects employer-based insurance and Medicare and creates a new system for individual and families seeking health insurance coverage. Premiums in the system would be income-based and premium subsidies would be available for those who need them. The plan would also impose limits on provider payments and other cost controls would be implemented to control premium costs. The Urban Institute plan includes a chart that compares a wide range of health care reform proposals, identifying the strengths and weaknesses of each.

More men with low-risk prostate cancer are forgoing aggressive treatment

Via Washington Post

In a study published in the Journal of the American Medical Association (JAMA), researchers reported that men with low-risk prostate cancer are increasingly choosing active surveillance of their disease instead of surgery and radiation. The study, which included more than 125,000 men with prostate cancer treated between 2005 and 2015, found a major shift in treatment decisions over that decade. In 2005, only 27 percent of men under age 65 chose watchful waiting instead of active treatment. By 2015, that proportion had grown to 72 percent. Cancer care experts are applauding the shift in treatment choices, which spares men the serious side effects of treatment and results in comparable outcomes.

CMS considers paying all Medicare providers for cancer gene therapies

Via Modern Healthcare

The Centers for Medicare & Medicaid Services (CMS) has initiated a review of how and under what terms the Medicare program will cover the recently approved CAR T-cell therapies. These therapies have provided significant benefits to certain leukemia and lymphoma patients.  Some patients experience serious side effects from the treatments.  Public comment on the review is accepted until June 15, 2018.  A public meeting will be held on August 22, 2018.  The final decision is due on February 16, 2019.

A new weekly roundup of policy news affecting the cancer community.

In order to bring you the latest cancer-related health care policy and news, we at NCCS are combining our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

Your feedback is always welcome to make our emails more useful to you. Please send comments to

Subscribe to our email list and receive these updates in your email box each week »

Thank you for your support of NCCS.


Proposed CHIP Cuts

This week the Trump administration proposed a $15.4 billion package of spending cuts across 10 federal departments, with half of the cuts expected to come from CHIP (Children’s Health Insurance Program). As the Georgetown Center for Children and Families reports, following the bipartisan agreement earlier this year to extend CHIP funding for ten years, it was surprising to hear that the administration wants to cut CHIP funds. Two billion dollars in cuts would come from the Child Enrollment Contingency Fund. The Contingency Fund is a “rainy day” fund put in place to help prevent states from running out of money. Contingency Fund dollars are made available to states if they experience an unexpected surge in enrollment, perhaps due to natural disasters or an economic downturn, ensuring that eligible children can continue to get covered.

Association Health Plans Hidden in Farm Bill

There are more health care policies emerging from an unlikely place: the farm bill. Kaiser Family Foundation reports that in the House version of the massive bill—amid crop subsidies and food assistance programs—is a provision that would provide less comprehensive health insurance through associations than plans offered through the Affordable Care Act. It calls for $65 million in loans and grants administered by the Department of Agriculture to help organizations establish agricultural-related “association” type health plans. Under that proposal, association plans would not have to offer coverage across 10 broad “essential” categories of care, including hospitalization, prescription drugs and emergency care. They could also spend less premium revenue on medical care.

Premium Increases

Insurance companies in Virginia and Maryland announced significant health care premium hikes and cited the administration’s actions as reasons for the rising rates, including repeal of the individual mandate. They also said they expect more increases in the fall. Read more on »

Drug Prices

Lastly, this afternoon, the White House announced a plan regarding the high cost of prescription drugs in the U.S. Preliminary analyses suggest that the policy proposals will have a relatively modest impact, but NCCS will continue to review the plan and follow these issues as they develop.

Read the plan on »


This is a chart shared by Sarah Kliff at from a study that looked at the variation of MRI costs within a hospital based on contracts with different payers.  Very interesting insights about the contributing factors of the high price of care in the United States. Read more about the study here »


‘World-first’ call for exercise to be prescribed to all Australian cancer patients

Via ABC News (Australia)

An interesting article that outlines how 25 health organizations in Australia are recommending that exercise be prescribed to all cancer patients. “’We’re at a point where the level of evidence is really indisputable and withholding exercise from patients is probably harmful,’ said Associate Professor Prue Cormie, who is chair of the COSA report group and lead author of the statement.”

What’s on the Trump administration’s $15B cost-cutting list

Via Politico

As mentioned above, the Trump administration sent a $15.4 billion dollar package of suggested cuts in federal spending to Congress. What caught NCCS’ eye and raised concern is where some of these cuts would occur. Namely, $6.96 billion cut from the Children’s Health Insurance Program, which helps provide health insurance to low income families and children, helping to cover cancer treatments for those affected. Second, $800 million from the Center for Medicare and Medicaid Innovation (CMMI), which is developing new models to reduce costs and improve care, including for those facing cancer. As noted, the chances of this passing the Senate are slim, but only requires a simple majority.

For mothers with advanced cancer, parenting concerns affect emotional well-being

Via UNC Lineberger News

This headline will come as no surprise to many who have a cancer experience. But as patient-centeredness continues to gain momentum in both cancer care and research, we’re beginning to see more studies like this one. The physical implications of cancer are well documented, and now we are beginning to learn more about the psychological trauma cancer causes as well. One item to highlight is that the study authors “found that parenting concerns were significantly associated with lower quality of life—almost as much as declines in day-to-day physical functioning.” Hopefully, this will eventually lead to more support for parents facing these situations.


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