financial issues Archives - NCCS - National Coalition for Cancer Survivorship

NCCS Joins 28 Patient and Consumer Groups Urging the Administration to Implement a Special Enrollment Period for Healthcare.gov

April 1, 2020/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Affordable Care Act, COVID-19, Financial Toxicity, Health Equity, Pre-Existing Conditions, Quality Cancer Care NCCS News /by actualize

The Trump administration decided against opening a special enrollment period for Healthcare.gov, which would allow uninsured individuals to purchase plans outside of the open enrollment period.

NCCS joined with 28 patient and consumer groups to urge the administration to implement a special enrollment period as the nation fights to protect its citizens from the COVID-19 virus. The Affordable Care Act does allow for people who have lost employer-sponsored health insurance to enroll, which is important to the nearly 10 million people who filed unemployment claims in March.

An excerpt from the statement:

As research shows again and again, access to comprehensive health insurance means access to timely, medically-necessary health care. If someone without health insurance today contracts the COVID-19 virus, they may be forced to make the difficult decision to not be tested and treated due to fears about the cost of care. That puts our entire society – particularly the people with that we represent – at risk. All Americans need immediate, reliable access to quality, affordable health insurance.

Read the Full Statement

Download the Statement »

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Coronavirus and Cancer Resources for Survivors

March 20, 2020/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, COVID-19, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care, Shared Decision-Making NCCS News /by actualize

UPDATED MAY 12, 2020

NCCS has heard from many survivors who feel uniquely vulnerable due to their history of cancer treatments. And we have heard from people currently in treatment, who are worried about delays in care and navigating a stressed health care system.

We’re partnering and consulting with several cancer organizations and experts to address the questions and concerns survivors have shared. Please bookmark this page, as it will be updated frequently.

Frequently Asked Clinical Questions

Dr. Richard Schilsky and Shelley Fuld Nasso

Richard Schilsky, MD, FACP, FSCT, FASCO, and NCCS CEO Shelley Fuld Nasso

NCCS and the American Society of Clinical Oncology (ASCO) are working together to provide information about how coronavirus 2019 (COVID-19) could potentially affect the health and cancer care of people diagnosed with cancer.

Click the link below to find answers to cancer survivors’ frequently asked clinical questions about COVID-19 from ASCO Chief Medical Officer and Executive Vice President Dr. Richard Schilsky.

Common Questions about Coronavirus 2019 and Cancer: Answers for Patients and Survivors »

We will continue sharing survivors’ clinical questions with ASCO, so if you have questions that are NOT answered here, please let us know.

NCCS Podcast Hosts Health Care Experts Who Address Coronavirus’ Impact on Cancer Survivors

Listen to NCCS’ podcast, Cancer Convos, for more insights on COVID-19 and its impact on cancer patients and survivors. Subscribe to Cancer Convos on Apple Podcasts or your favorite podcast app.

How Survivors Can Cope With the Anxiety of COVID-19

Answered by L. Imani Price, PhD.

Dr. L. Imani Price is a licensed psychologist at Women’s InnerFitness and Wellness Center and serves as the Vice Chair of the Board of Directors at Breast Care for Washington, D.C.

Dr. Price suggests this expert advice:

Many survivors are experiencing stress, anxiety, and PTSD from the new expectations and restrictions resulting from the COVID-19 pandemic. These uncertain times can lead to feelings of helplessness and a lack of control over one’s life. This may trigger thoughts of stressful events of the past with worries about one’s health or that of loved ones.

Although experiencing some levels of anxiety and fear can be expected, we do have some control over our lives, despite the global restrictions from the pandemic.

While learning to live indoors:

Develop a routine or schedule for your time, which includes the time you will wake up, time for movement/exercise, regular check-ins with friends, and regular family activities. Having a schedule can help center your emotions and give you a sense of control over your life.
Take a breath. Deep breathing helps reduce stress in the body, reduces muscle tension, and calms the mind. It also increases the flow of oxygen to the brain, which helps with clarity, memory, and wellbeing. You can use DVDs or apps for exercising, find free breathing or meditation apps (Insight Timer or Calm) for techniques, or walk around your home or yard and climb stairs for movement.
Stay in touch with the people you love with virtual communication and telephone calls. Use your time to start a daily conference or virtual call through a free conference or virtual call company with friends for a book club; Bible Study; prayer; or start a recipe exchange club where members alternate bringing new recipes to the group, cook it at the same time, and share the outcomes.
Start a new hobby or learn a new skill. Embrace your creativity to help with mental acuity, expression, and entertainment. Let your creative self shine with these few suggestions and anything else your thoughts will lead you to do.

Food Assistance Program for Cancer Patients

Team Rubicon, in collaboration with Patient Advocate Foundation (PAF) and funded by the Bristol Myers Squibb Foundation, will provide assistance to immunocompromised patients living with cancer, whose ability to access or afford food and other nutritional needs are at risk due to the COVID-19 pandemic.

Eligible patients, their caregivers or care team members can request complimentary delivery of food and other critical supplies directly to their place of residence.

Patients with an identified financial need will be able to apply for a one-time grant of $500 to help pay for food and nutritional needs including groceries, food delivery or pick up and medically-tailored meals.

Apply Now at teamrubiconusa.org »

Helpline for Cancer Support

The Cancer Support Community (CSC) Cancer Support Helpline is staffed by counselors and resource specialists who have extensive years of experience helping people affected by cancer. Counselors and resource specialists can be reached by phone at 1-888-793-9355 or live chat from Monday through Friday, 9:00 a.m. – 9:00 p.m. ET, and Saturday and Sunday from 9:00 a.m. – 5:00 p.m. ET.

Resources About Loss of Health Coverage

This blog on COVID-19 by Karen Pollitz at Kaiser Family Foundation outlines what you can do about losing health coverage during this crisis.

For information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA), see these resources:

For information on Special Enrollment Periods, see here:

Enroll in or change 2020 plans — only with a Special Enrollment Period

For updated guidance on grace periods for binder and premium payments see here:

Payment and Grace Period Flexibilities Associated with the COVID-19 National Emergency

Additional Resources

“Coronavirus: What Cancer Patients Need to Know”
Fred Hutchinson Cancer Research Center
“Coronavirus: What People with Cancer Should Know”
National Cancer Institute
“Coronavirus 2019: What People With Cancer Need to Know”
American Society of Clinical Oncology’s (ASCO) Cancer.Net
ASCO – Coronavirus Resources
ASCO.org
“Coronavirus Disease 2019 (COVID-19) in the U.S.”
Centers for Disease Control and Prevention (CDC)

More Resources to Come!

We will soon be addressing how NCCS is advocating for telework, provisions in the Coronavirus Relief Bill that can help survivors, as well as how to get the exercise and nutrition survivors need while practicing social distancing.

Bookmark this page for more information!

Questions About Coronavirus?

NCCS is seeking answers from public health experts on the coronavirus and its impact on cancer patients and survivors. Please contact us at www.canceradvocacy.org/contact with any questions or concerns you have and what data would be helpful to you as we gather this information.

NCCS Coronavirus Coverage

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Health Care Roundup: “Surprise” Billing and ACA Updates; NCCS on Fear of Cancer Recurrence; Study on Long-Term Young Survivors; End-of-Life Care; More

February 21, 2020/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Financial Toxicity, Health Equity, Palliative Care, Pre-Existing Conditions, Quality Cancer Care Health Care Roundup, NCCS News /by actualize

We aim to make the Health Care Roundup 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 feedback@canceradvocacy.org.

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

HEALTH CARE HIGHLIGHTS

How Should Patients Be Protected From “Surprise” Medical Bills?

The Latest: Democratic and Republican House staffers met with Speaker Pelosi’s office to try to protect patients from getting large “surprise” medical bills. There was no breakthrough, according to The Hill.

The Issue: Patients can receive extremely high medical bills during emergency situations when they are taken to an out-of-network hospital, or from out-of-network providers, even at an in-network facility or hospital. There is consensus about the problem, but not about the solution. Journalist and physician Elisabeth Rosenthal outlines in the New York Times the biggest roadblock: the players in the health care industry are at war over “who gets to keep the fortunes generated each year from patient illness.”

Rosenthal adds:

“So today your hospital and doctor and insurer — all claiming to coordinate care for your health — are often in a three-way competition for your money… Major sectors of the health industry have helped to invent this toxic phenomenon, and none of them want to solve it if it means their particular income stream takes a hit. And they have allies in the capital.”

Meanwhile: "All sides agree that patients should be protected," according to The Hill. Yet, the leaders of the House Energy and Commerce Committee and the House Ways and Means Committee have very different solutions and have put forward rival bipartisan bills.

For now, patients are still unprotected from surprise billing.

Affordable Care Act (ACA) Updates

Enrollment Experiment Yields Increases: California reinstated the individual mandate and expanded the ACA’s insurance subsidies in an experiment to see what happens when policymakers “beef up” the ACA. The result was a 41% increase in new enrollment.

Supreme Court Decisions Expected: Friend of NCCS and ACA expert, Katie Keith from Georgetown University, says the Supreme Court will issue at least two ACA-related decisions before July 2020. The issues — the risk corridors program and the religious or moral exemptions to the contraceptive mandate — could have implications that extend beyond the ACA.

WHAT WE’RE READING

The Emotional Trauma of Fear of Cancer Recurrence

Healthline

NCCS CEO Shelley Fuld Nasso talked to Healthline.com about the fear of cancer recurrence.

“Sometimes [cancer survivors’] family and friends don’t understand the fear they live with. They think, ‘You’re done, everything is great.’ But the survivor always has that nagging thought in the back of their minds.”

NCCS CPAT advocates Jersi Baker and Liza Bernstein each shared their experience of facing multiple recurrences for the article.

Liza Bernstein: “The traumas of everything you go through, surgeries, toxic treatments, your life disrupted, your brain goes to, ‘I could go back to that or worse.'”

Jersi Baker: “My tagline that I always [Tweet] is ‘Live life now’ and I really believe that.”

Young Cancer Survivors Have Higher Risk of Severe Health Problems Later

New York Times

A recent study suggests that people who survive childhood cancers are more likely to experience significant health problems, such as heart disease and recurring or new cancers, and die prematurely. The study’s lead author, Dr. Tara Henderson, director of cancer survivorship at the University of Chicago Comprehensive Cancer Center, said that with improved survival from childhood cancer, there is a need to focus more on long-term side effects of treatment.

Op-Ed: Think You Want to Die at Home? You Might Want to Think Twice About That

LA Times

Dr. Nathan Gray, assistant professor of medicine and palliative care at Duke University School of Medicine, reflects on the burdens of patients dying at home.

“While it might seem like more people spending their last days at home would be better for everyone, seeing the brutal realities of caring for a sick loved one at home has sobered my enthusiasm for sending people home to die.”

WHAT WE’RE WATCHING

Health Care For All: What Does That Mean?

Kaiser Health News Video

Health care is a top issue for many voters and, as Democrats fight over how best to cover more people, voters are worried about the COST of care — and for good reason. U.S. health spending is dramatically higher than other industrialized nations. Kaiser Health News explains health plans in the 2020 elections:

NCCS Expresses Opposition to CMS Healthy Adult Opportunity Guidance Permitting Medicaid Block Grants

January 30, 2020/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Affordable Care Act, Financial Toxicity, Health Care Coverage, Health Equity, Pre-Existing Conditions Issue Statements, NCCS News /by actualize

WASHINGTON, DC. (January 30, 2020) – The Centers for Medicare & Medicaid Services (CMS) earlier today announced a guidance to state Medicaid programs that encourages states to create a block grant program for the portion of their Medicaid program expanded under the Affordable Care Act. The National Coalition for Cancer Survivorship (NCCS) opposes the CMS action to permit Medicaid block grants because of their potential negative impact on people with cancer. NCCS issued the statement below on Medicaid block grants.

“The National Coalition for Cancer Survivorship (NCCS) represents people with all forms of cancer in efforts to ensure access to quality cancer care. NCCS objects to the guidance issued today, which would provide states advice on how to cap the Medicaid expansion program.

“Block grants or caps on Medicaid spending may have several results. States that implement Medicaid block grants will reduce their Medicaid rolls, reduce benefits for those who retain eligibility, increase cost-sharing, or reduce provider payments. Any of these actions, and certainly all of them combined, will eliminate access to care for some and affect the adequacy and quality of care for others. We do not believe that the flexibility of block grants can be utilized without affecting patients negatively.

“The Centers for Medicare & Medicaid Services (CMS) has named its new block grant program the Healthy Adult Opportunity and stated that it will provide states flexibility in providing care to adults under age 65 who are not eligible for Medicaid as a result of disability or in need of long-term care. The name of the program ignores the fact that adults who are on Medicaid expansion are ‘healthy’ only until they receive a cancer diagnosis or other serious diagnosis. At that point, they must have Medicaid benefits that are adequate and comprehensive so that they can receive the treatments they need to survive cancer. Such access may well not be available in a block grant program.

“We oppose the movement to Medicaid block grants, which will compromise access to quality cancer care for many enrolled in Medicaid expansion programs.”

NCCS Statement on ACA Lawsuit Ruling Issued by Fifth Circuit Court of Appeals

December 19, 2019/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Affordable Care Act, Financial Toxicity, Health Care Coverage, Health Equity, Pre-Existing Conditions Issue Statements, NCCS News /by actualize

December 19, 2019 – The National Coalition for Cancer Survivorship (NCCS) notes that the Fifth Circuit Court of Appeals issued its opinion in the case of Texas v. United States, a case challenging the Affordable Care Act (ACA).

In a 2-1 opinion, the Fifth Circuit upheld the decision of the District Court for the Northern District of Texas that found the ACA individual mandate unconstitutional. However, the appellate court remanded the case to the District Court for additional analysis regarding whether other parts of the ACA can stand without the individual mandate.

NCCS would first like to offer assurances to those Americans who are insured by health insurance plans purchased through the ACA marketplaces, those who are enrolled in Medicaid authorized by ACA, and many others who enjoy the pre-existing condition protections and other protections of the ACA. You will continue to benefit from the important programs and protections of the ACA while the litigation continues and the courts proceed with consideration of the ACA challenge.

At the same time, NCCS is disappointed that a cloud of uncertainty hangs over the ACA, a cloud that causes worry for individual consumers and that affects the implementation and administration of the law. We will continue to press lawmakers to reassert their support for the patient protections of the ACA, for the subsidies that make insurance affordable for many Americans, and for access to Medicaid. We have evidence that the ACA has improved access to cancer care for many vulnerable Americans, and we are not satisfied to see that progress reversed.

We understand that the state attorneys general who are defending the ACA will ask the Supreme Court to review Texas v. United States without delay and before the District Court reviews the case again on remand. Because this request may be the fastest path to resolution of the legal questions surrounding the ACA, we support this effort.

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Coalition Statement

NCCS also joined with 28 patient groups in a statement voicing concerns with the recent ruling in the ACA lawsuit. Read the statement below or view in a new browser tab.

Previous NCCS Coverage of Texas v. United States

17 Patient Groups Urge Appeals Court to Uphold Health Care Law

Health Care Roundup: ACA Lawsuit Update; Chronic Pain Study; “Have Cancer, Must Travel;” “Survivorship Issues Reshape a Researcher’s Career;” More

Health Care Roundup: Justice Dept Changes ACA Position; Medicaid Work Requirements Struck Down; Caregivers’ Costs; End-of-Life Conversations; More

NCCS Applauds House Vote on Behalf of Patients to Defend the ACA and Its Pre-Existing Condition Protections

NCCS Joins Coalition of Organizations Urging Congress to Extend the Medical Expense Deduction Permanently

December 6, 2019/in Cancer News, Cancer Policy Blog, Congress, NCCS News, Policy Comments Access to Care, Financial Toxicity, Health Care Coverage, Health Equity NCCS News, Policy Comments /by actualize

The National Coalition for Cancer Survivorship (NCCS) joined with AARP and 47 other organizations in letters to the House and Senate asking Members to co-sponsor the Medical Expense Savings Act, which is bipartisan legislation that would make permanent the 7.5 percent threshold for the medical expense deduction. This deduction provides an important tax relief for many patients which helps offset the high costs of cancer care. Without action by Congress, the threshold will rise to 10% for 2019.

For more than 75 years, Americans with high health care costs have been able to deduct medical expenses from their taxes. For the millions of Americans who annually take this deduction, it provides important tax relief which helps offset the costs of acute and chronic medical conditions. This includes costs associated with long-term care, assisted living, and nursing homes.

…

Even for those people who are covered by Medicare, beneficiaries spend a large portion of their income on out-of-pocket expenses. The average Medicare beneficiary spends about $5,680 out-of-pocket on medical care.

Read the letters below or download the letter to Senators here and the letter to House Members here.

Coalition Letter Sent to Senators

Coalition Letter Sent to House Members

Health Care Roundup: ACA Open Enrollment and “Junk” Insurance; E-Cigarette Ban; Integrative Oncology; FDA Breast Implant Warning; More

November 22, 2019/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Financial Toxicity, Health Care Coverage, Health Equity, Pre-Existing Conditions Health Care Roundup, NCCS News /by actualize

We aim to make the Health Care Roundup 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 feedback@canceradvocacy.org.

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

HEALTH CARE HIGHLIGHTS

Congress Passes Spending Bill

Yesterday, Congress approved a stopgap spending bill that would avert a government shutdown, but only until December 20. Until then, funding will be available for all federal government departments and agencies, as well as a number of health care community programs. The divide in Congress remains around the border wall, the same issue that led to last year’s government shutdown.

ACA Open Enrollment, "Junk" Insurance Plans

Open enrollment for the Affordable Care Act’s (ACA) Healthcare.gov marketplace is in full swing. After major technical glitches, in addition to cuts to enrollment marketing and assistance, the number of enrollees is down this year from past years. As the Washington Post reports, the administration is also redirecting some Healthcare.gov users to private insurance exchanges that sell “junk” health plans — short-term limited duration plans that do not include the ACA’s patient protections such as requiring coverage for pre-existing conditions.

From the Washington Post:

Critics say that both the sale of short-term plans through private brokers and consumers’ ability to select such plans are the latest examples of Trump administration efforts to weaken the ACA after failing to repeal and replace the law in Congress…The rule allowing the sale of such plans was finalized late last year, just weeks before open enrollment, so this is the first year they are widely available.

NCCS opposed the expansion of short-term limited duration plans. Read more about why these plans are harmful for patients. »

Ban on Flavored E-Cigarettes

President Trump will meet with vaping industry executives and public health advocates today to discuss a ban on non-tobacco flavored e-cigarettes. The administration has wavered in its support for a ban on flavored e-cigarettes, but with recent reports and mounting evidence that they lead to vaping-related lung illnesses, the President has called a meeting with key stakeholders to address the problem.

Vaping was also a focus during the Senate confirmation hearing this week for Dr. Stephen Hahn, Trump’s nominee to lead the FDA. Dr. Hahn, a radiation oncologist and chief medical executive of MD Anderson Cancer Center, addressed the issue of vaping at the hearing on Wednesday. He pledged to take bold action to address the crisis but did not commit to a full ban on e-cigarettes. Dr. Hahn responded, "I think it’s a serious issue. And I think it requires bold action to keep these out of the hands of kids.”

CHART OF THE WEEK

Insurer Participation on ACA Marketplaces, 2014-2020

Kaiser Family Foundation

ACA experts report that insurers are entering new states and expanding their footprints. Despite repeal of the individual mandate penalty, premiums are dropping. The ACA continues to be resilient. Read more »

Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »

IMPORTANT READS

Open Enrollment: What you need to know

Kaiser Health News

With a lot of unknowns around the ACA lawsuit, the marketplace is still strong and experts agree that not a lot will change for 2020, so sign up for your health coverage now!

FDA wants stronger warning on breast implants about risks

STAT News

The Food and Drug Administration (FDA) issued new guidance on communication with patients about the risks of breast implants, including a proposed requirement for a boxed warning and a patient decision checklist, proposed to assist patients in making decisions regarding breast implants.

Integrative Oncology

Cancer Today Magazine

Cancer Today Magazine featured NCCS CPAT Member Betsy Glosik in an informative article about the growing trend of cancer patients using complementary therapies — such as yoga, acupuncture, and tai chi — while taking conventional treatment. Glosik said, “I was looking for something else that wasn’t going to be another drug that was going to tear my body down.”

Health Care Roundup: Drug Pricing Bill Advances; ACA Open Enrollment & Premium Data; Cancer Overdiagnosis; “Medicaid Haves and Have-Nots”; More

October 25, 2019/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Drug Pricing, Financial Toxicity, Health Care Coverage, Health Equity Health Care Roundup, NCCS News /by actualize

We aim to make the Health Care Roundup 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 feedback@canceradvocacy.org.

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

HEALTH CARE HIGHLIGHTS

House Drug Pricing Bill Advances Out of Committee

The biggest health care news this week was the approval by the House Ways and Means Committee of H.R. 3, the Lower Drug Costs Now Act — Speaker Pelosi's drug pricing bill. The bill advanced along party lines, with opponents citing a recent report from the Congressional Budget Office (CBO) that said the plan would harm drug innovation and reduce the number of new drugs coming to the market. To address this concern, some Democrats are considering investing savings from H.R. 3 into the National Institutes of Health (NIH) to fund drug research. However, pharmaceutical industry lobbyists argue that NIH cannot replace private sector research and development.

The CBO score also showed that the plan would save Medicare $345 billion over the next decade, as a result of a provision that would allow the government to directly negotiate lower drug prices with private companies in Medicare’s Part D drug program. The bill will now head to the full House floor for a vote in the coming weeks. President Trump has not indicated whether he would support the bill, and Paige Winfield Cunningham of the Washington Post reports that Speaker Pelosi and President Trump are still working on a drug pricing deal. She writes, “Were the pair to arrive at any agreement on drug prices, it would be in the face of enormous odds.”

Meanwhile, on the Senate side, Senators Grassley (R-IA) and Wyden (D-OR) have introduced their own drug pricing plan — this one bipartisan. Their legislation would impose an out-of-pocket cap for beneficiaries and cap drug price increases at the rate of inflation. The Grassley-Wyden bill has the support of the President and has been described as “middle ground” by lawmakers. With the government funding deadline coming up in just a few weeks, this fall is sure to be busy in Washington.

CHART OF THE WEEK

With the ACA’s open enrollment starting November 1, Kaiser Family Foundation has a helpful fact sheet outlining health plan options and what’s covered through the ACA.

Thanks to the financial help that nearly 9 out of 10 HealthCare.gov customers receive, 1 out of 3 marketplace customers will have a plan available in 2020 with a premium of less than $10 per month, according to new data released this week by the Centers for Medicare and Medicaid Services (CMS). The vast majority will have a plan available for less than $100 per month. However, many consumers are not aware their premium costs could be that low.

Get America Covered created a chart outlining a knowledge gap among consumers between what they consider an affordable premium and what they expect coverage to actually cost:

Get America Covered Chart

Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »

IMPORTANT READS

Growing tumors in a dish, scientists try to personalize pancreatic cancer treatment

STAT News

Dr. Joseph Grossman is leading a study where pancreatic cancer cells are grown in lab dishes and are each dosed with different drugs in order to identify personalized treatment options for one of the deadliest cancers.

State Border Splits Neighbors Into Medicaid Haves And Have-Nots

National Public Radio (NPR)

This article paints a personal picture of a national issue by illustrating the stories of people in neighboring states, one that chose to expand Medicaid and one that did not. A recent University of Michigan study found Medicaid expansion substantially reduced mortality rates from 2014 to 2017.

Opinion: Blame rising cancer overdiagnosis on ‘irrational exuberance’ for early detection

STAT News Opinion

Even though overall mortality from cancer is falling, the overall incidence is rising. In this opinion piece, Dr. H. Gilbert Welch blames overdiagnosis — the diagnosis of cancers not destined to cause symptoms or death.

Trump Is Trying Hard To Thwart Obamacare. How's That Going?

National Public Radio (NPR)

NPR outlines the five biggest changes made to the ACA during the Trump Administration, including the repeal of the individual mandate and attempts to repeal the entire law. Despite all these efforts, the ACA is still the law of the land and provides critical health coverage to millions of Americans.

Health Care Roundup: Metastatic Breast Cancer Awareness; More on “Junk Insurance;” Reviewing Effects of California’s Surprise Billing Law; More

October 4, 2019/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Affordable Care Act, Financial Toxicity, Health Equity Health Care Roundup, NCCS News /by actualize

We aim to make the Health Care Roundup 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 feedback@canceradvocacy.org.

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

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

Nearly two in five adults lacked confidence in affording health care if they became very sick.

Commonwealth Fund

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.

Read the full Commonwealth Fund survey report here »

Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »

IMPORTANT READS

Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention

Time Magazine

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.”

With the Affordable Care Act’s future in doubt, evidence grows that it has saved lives

Washington Post

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.”

Workplace Accommodations Would Ease the Burden for Patients With Cancer

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.

He disclosed his 2-year-old’s cancer in a TED Talk. Liver donors lined up to help.

Washington Post

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.

NCCS Survivorship Survey: Cancer Survivors Share Their Top Concerns

September 15, 2019/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Care Planning, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care, Survivorship Care NCCS News /by actualize

As part of its Elevating Survivorship initiative, the National Coalition for Cancer Survivorship (NCCS) fielded an online survey to understand cancer survivorship experiences and needs across a range of cancer patients.

NCCS and our partner patient advocacy organizations promoted the survey to our constituents, and 1,380 cancer survivors responded.

Some of the key findings include:

Treatment Experiences

Patients report many physical and emotional side effects (See Figure 1). Fatigue and anxiety top the list of both the most common and long-term effects. These are also among the most severe side effects reported by patients.
However, patients report that while healthcare providers are helpful at addressing their physical side effects such as nausea and vomiting, health care providers (HCPs) are far less helpful at addressing fatigue, anxiety, depression and cognitive effects.

I do wish that my health care team did more to address the emotional side effects, particularly in screening for it. I developed a lot of anxiety, but I just thought it was normal. Only in retrospect did I realize I had a problem.Survey Respondent

Post-Treatment Information and Care

Few feel very prepared for the transition to post-treatment, nor informed about how to manage their health post-treatment.
While most patients have spoken to a healthcare provider about post-treatment care, over half say they asked their doctor/HCP, and far fewer say their provider initiated these conversations.
Satisfaction with post-treatment care is varied, with few describing it as excellent. As a result, more rely on online sources for information rather than their HCPs.

I wish that my health care team would address survivorship issues and long-term effects of my cancer diagnosis. At this point I am just told to call if there are any changes in the way that I feel, this leaves me feeling uneasy and uncertain about the future of my health.Survey Respondent

Survivorship Needs

Figure 2. Click to expand.

When asked to identify their level of concern about a range of issues, financial issues tops the list (getting/keeping health insurance, having financial support), followed by managing ongoing side effects, uncertainty about the future, and having the energy to make it through the day.
There is clearly a disconnect between patient concerns and support from HCPs. Less than a third rate their HCP as “very helpful” on their top issues.
Many are interested in survivorship resources, especially programs for managing long-term symptoms, but few say these are available from the HCPs today (See Figure 2).

I would like to meet more cancer survivors. I feel now that I am a different person and that no one understands what I’ve been through. Most people think that because you survived, that you are great and not in need anymore. It would be helpful to have some friends who have gone through the same journey.Survey Respondent

ACCC and NCCS Joint Survey Report

The Association for Community Cancer Centers (ACCC) conducted a companion survey of its provider members, and the results of the two surveys were published in ACCC’s Oncology Issues journal:

Read “Elevating Survivorship: Results from Two National Surveys” [PDF] »

Read the Final Survey Report

NCCS thanks the following organizations for promoting the survey to its stakeholders: CancerCare, Fight Colorectal Cancer, Melanoma Research Alliance, Ovarian Cancer Research Alliance, the LIVESTRONG Foundation, Melanoma Research Foundation, Supporting Our Sisters Inc., Cancer Support Community, and LUNGevity.

Read the full final report of the Survivorship Survey below or download it here (PDF Document).

Grant funding for Elevating Survivorship provided by: Bristol-Myers Squibb, AbbVie, Pharmacyclics, Takeda, Celgene, Novartis, and Eisai.

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Some of the key findings include:

Treatment Experiences

Post-Treatment Information and Care

Survivorship Needs

ACCC and NCCS Joint Survey Report

Read the Final Survey Report

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