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Health Care Roundup: NCCS COVID-19 Webinars & Podcast; Paid Leave for Vulnerable Patients; Resources for Finding Coverage; “Chemo Brain” Study; More

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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.

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If you have any cancer-related questions or concerns about COVID-19, please reach us at www.canceradvocacy.org/contact.

HEALTH CARE HIGHLIGHTS

NCCS Launches Webinar and Podcast Series

NCCS has been working diligently to bring you the most up-to-date and critical information for cancer survivors regarding the COVID-19 pandemic.

A Conversation with Otis Brawley, MD

Last week, we hosted a webinar with one of the nation’s leading oncology experts, Dr. Otis Brawley. In this webinar, he outlined how this public health crisis is impacting cancer patients and survivors and what they can do to stay safe.
Video and Transcript: A Conversation with Otis Brawley, MD »

“This is a really difficult time. My recommendation to anyone who has cancer or anyone who lives with someone who has cancer is to stay indoors, stay away from other people, do all the things that we’ve been talking about: hand-washing, avoid people by six feet if you have to go out.”

Otis Brawley, MD and NCCS CEO Shelley Fuld Nasso

New NCCS Podcast "Cancer Convos." This conversation is also the first episode of our brand new podcast "Cancer Convos: Survivorship. Advocacy. Policy." Subscribe and Listen here »

COVID-19 and Cancer: Managing Stress, Anxiety, & Grief

Yesterday, we hosted a webinar on managing anxiety, stress, and grief with psychologist Dr. Imani Price and a panel of cancer survivors and advocates.

Dr. Price shared tips on how to cope with stress during this unique time, including strategies such as connecting with friends and family virtually, taking time to get outside each day, getting sufficient sleep, and eating well.

The cancer survivors on the panel shared their struggles and advice for coping with the isolation and fear that many cancer survivors are facing during the COVID-19 pandemic.
Watch the video of the discussion. »

Because of you, we are able to allay fears, provide tools, share credible information, and support the wellbeing of survivors and their families during this time of crisis. Donate today to support our COVID-19 emergency response and advocacy on behalf of cancer survivors.

Make a Gift to NCCS »

Policy Update

In addition to curating resources and content for cancer survivors during this trying time, we also continue to make sure the voices and patients are heard in public policy efforts.

NCCS joined with other patient advocacy organizations in a letter to Congressional leadership that outlined some key priorities that address barriers to patient access to care and coverage during the current public health crisis. Those priorities include special enrollment periods and changes to the marketplace to address barriers, and disruptions in clinical trials. Read the letter »

NCCS also joined in a letter urging Congress to expand eligibility for the paid family and medical leave program to include Americans who are most vulnerable to the COVID-19 pandemic – such as cancer survivors and their caregivers. Expanded paid leave is needed to ensure that individuals at high risk for adverse complications from COVID-19 and working members of their households can remain home for the duration of this crisis. Read the letter »

See the legislative alert below, which outlines how to take action and how to reach out to your Members of Congress to ask them to act now:

Legislative Alert: Tell Congress to Expand Paid Leave for People With Chronic Heath Conditions

NCCS is here to help. Use the links below to call or email your Members of Congress, or contact Lindsay Houff and we are happy to help you.

Sample script for calling or emailing your legislators:

Subject: Expand Paid Leave for People with Chronic Conditions During COVID-19

Dear [Legislator title, name],

We appreciate the expansion of emergency use of the Family and Medical Leave Act that was recently passed by Congress. I am writing to ask that it include cancer survivors, who may require time away from work due to the risk COVID-19 poses to their health or health of a loved one. Right now, cancer survivors are not included in individuals who are eligible for FMLA paid leave.

Because of their history of cancer and cancer treatment, cancer survivors may have weakened immune systems which can then lead to a reduced ability to fight off infections. Cancer survivors may be at higher risk of health complications from COVID-19, and may experience more serious COVID-19 infection if they acquire it.

As a constituent, I urge you to expand eligibility for the paid family and medical leave program to protect Americans who are most vulnerable to the COVID-19 pandemic.

Thank you for your consideration.

Sincerely,
[Your Name and Address]

CHART OF THE WEEK

NCCS CPAT advocate Randy Broad sent this chart to us and we thought you’d get a kick out of too!

WHAT WE’RE LISTENING TO

Cancer Convos PodcastNCCS Podcast: "Cancer Convos." We’re excited to launch our brand new podcast: "Cancer Convos: Survivorship. Advocacy. Policy." The first episode features our conversation with Otis Brawley, MD about cancer and COVID-19, and was released this week.

Listen and Subscribe to Updates »

WHAT WE’RE READING

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:

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

Chemo-Brain: Women on hormone therapy also report cognitive decline

eCancer

The Journal of Clinical Oncology released new data from the TAILORx study that reported cognitive decline from chemotherapy and hormone therapy in the initial three to six months of treatment. The cognitive decline leveled off at 12 and 36 months and did not return to pre-treatment levels. While cognitive decline is often thought to be associated with chemotherapy, the study found the decline was comparable between two groups of patients, one treated with chemotherapy and one treated with hormone therapy.

"I think we've generally assumed that cognitive impairment is due to chemotherapy. Our findings tell us that hormone therapy may also play a role. Future research is needed to understand better how hormone therapy affects cognition in the context of cancer treatment and also how to treat this symptom… Finding that long-term cognitive impairments were comparable between groups confirms we can retire the term 'chemo-brain' as it does not accurately describe the whole picture"

— Lynne I. Wagner, PhD, Wake Forest University

Read More »

Related Posts

Coronavirus and Cancer Resources for Survivors

Health Care Roundup: Virtual Cancer Policy Roundtable; COVID-19 News; Coronavirus Resources for Survivors; More

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Health Care Roundup: White House Proposes Health Care Cuts; NCI’s Sharpless to Head FDA; Care Planning; Patient Safety; More

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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 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 each week »

HEALTH CARE HIGHLIGHTS

White House Releases FY 2020 Budget

Earlier this week, the White House released the President’s Budget. This year's budget proposes to repeal and replace the Affordable Care Act (ACA) and cap Medicaid, and cuts federal health spending by $659 billion over 10 years. The budget also proposes shaving $818 billion from projected spending on Medicare over 10 years and cutting nearly $1.5 trillion from projected spending on Medicaid. In place of the current Medicaid structure, President Trump’s budget would give states “market-based health care grants” over 10 years. Congress rejected this idea in 2017 as part of the Graham-Cassidy bill because it would essentially cap Medicaid and would not keep pace with rising health care costs.

As the New York Times reports, the budget is seen by Democratic leaders as dead on arrival and is unlikely to have much effect on actual spending levels, which are controlled by Congress.

NCI's Sharpless Named FDA Acting Commissioner

This week, it was announced that Dr. Ned Sharpless of the National Cancer Institute (NCI) will become Acting Commissioner of the Food and Drug Administration (FDA) once Dr. Scott Gottlieb steps down. Dr. Sharpless has served as director of the NCI since 2017, and is also chief of the aging biology and cancer section in the National Institute on Aging’s Laboratory of Genetics and Genomics. His research focuses on the relationship between aging and cancer, and development of new treatments for melanoma, lung cancer and breast cancer.

NCCS is pleased to have Dr. Sharpless join us later this month at our biannual Cancer Policy Roundtable event to hear more about his focus areas and new role at the FDA. 

CHART OF THE WEEK

The President’s Budget Request

Centers for Medicare and Medicaid Services (CMS)

This year's budget proposes to repeal and replace the ACA and cap Medicaid, and cuts federal health spending by $659 billion over 10 years, as seen in the chart below:

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

Survivorship Care Plans May Help Patients After Cancer Treatment

Oncology Nursing News

Deborah A. Boyle, MSN, RN, AOCNS, FAAN, editor in chief of Oncology Nursing News, talks about the importance of survivorship care planning. She admits that while there’s still debate concerning care plans, “there needs to be a communication tool for all stakeholders involved with cancer survivorship.”

Read More »

Few Physicians Using CMS Advance Care Planning Codes

Medscape – (Free registration required to view article)

NCCS is a long-time proponent of advance care planning and palliative care. This article outlines how many physicians are not using advance care planning codes for Medicare beneficiaries, saying:

“The authors conclude that either clinicians are not having conversations with patients about their values and their life goals regarding their future healthcare, or they are having the conversations but are not billing properly or consistently for them.”

Read More »

2019 Top 10 List of Patient Safety Concerns

Medscape – (Free registration required to view article)

The non-profit ECRI Institute recently released it’s “2019 Top 10 Patient Safety Concerns” report. “This was the second year in a row that diagnostic errors were flagged as the most serious safety challenge in ECRI's annual compendium.” The implications for the millions of cancer patients diagnosed each year, and the millions more in survivorship, are obvious.

Read More »

State of Cancer Care in America (SOCCA): Reflections on an Inaugural Year

Journal of Oncology Practice

This editorial, published in the American Society of Clinical Oncology’s journal as part of their "SOCCA" series of articles, provides an oncologist perspective of cancer care in America.

The authors point out:

“The overarching message from this year’s SOCCA series is that cancer care teams are practicing in a complex health care delivery system. This complexity is driven by (1) reimbursement and financial challenges, (2) limitations of electronic health record (EHR) systems, and (3) the organization and geographic distribution of the workforce.”

Read More »

Related Posts

Health Care Roundup: FDA’s Gottlieb Steps Down; Hearings on High Costs; Coping with Cancer’s Aftermath; Why Insurers Deny Claims; More

Health Care Roundup: Senate Hearing w/Pharma CEOs; Medicare for All Introduced; Logistical Toxicity; FDA Warns About Robotic Surgical Devices; More

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What Caught Our Eye: Poor Doctor-Patient Communication; Senate GOP & Medicaid Cuts; Using Cancer “Battle Words;” News from ASCO17

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What Caught Our Eye (WCOE), June 9, 2017
What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.

In the Spotlight

“‘How long have I got?’: Why many cancer patients don’t have answers”


Via USA Today — For patients near the end of life, talking about their goals and values can help people avoid unwanted medical interventions, said Dr. Rachelle Bernacki, associate director of the Serious Illness Care Program at Ariadne Labs, a health care research center led by Dr. Atul Gawande. Read More »

Affordable Care Act

“Senate Republicans are closer to repealing Obamacare than you think”

https://twitter.com/dylanlscott/status/873236597885546496

Via Vox.com — The votes still aren’t there, but a path has opened to get them. Republicans have negotiated for a month inside back rooms of the Senate. They plan no public hearings on the legislation. Some of their members are eager to vote soon, acknowledging that public pressure against the bill is only likely to grow as the summer wears on.

Read More »

“Key GOP centrists open to ending Medicaid expansion”

Via The Hill — GOP moderates in the Senate are open to ending federal funding for ObamaCare’s Medicaid expansion, but want a longer deadline for ending the additional funding than their leadership has proposed.

Sens. Rob Portman (R-Ohio) and Shelley Moore Capito (R-W.Va.) have proposed a seven-year phase-out of federal funding for the Medicaid expansion, beginning in 2020 and ending in 2027.

Read More »

“They’re on Obamacare, they voted for Trump, and they’re already disappointed”

https://twitter.com/sarahkliff/status/872506683033047040

Read More »

Cancer Policy

“8 things doctors are buzzing about at the biggest cancer meeting”

Via The Washington Post — Partly because of the possibility of expensive combination therapies, many doctors are fretting about costs and whether their patients will be able to afford promising new drugs. Already, they say, ‘financial toxicity’ is hitting some patients hard.

Read More »

“Quantity Over Quality? Minorities Shown To Get An Excess Of Ineffective Care”

Via Kaiser Health News — Minority patients face a double whammy: Not only are they more likely to miss out on effective medical treatments than white patients, but, according to a new study, they’re also more likely to receive an abundance of ineffective services.

The study, published in the June issue of Health Affairs, examined 11 medical services identified as “low value” by the ABIM Foundation’s Choosing Wisely initiative. That program pinpoints unnecessary, overused medical tests and treatments in an effort to reduce waste and avoid needless risk in the health care system.

Read More »

“#ASCO17: Patient Engagement Improves Survival Outcomes”

Via ASCO Connection — Simple interventions can make huge differences. In this case, something obvious as giving our patients the means to let us know how they are doing, coupled with the infrastructure to act on this information, not only made them feel better, but produced a survival advantage that paralleled (maybe even surpassed) the latest treatments being celebrated on the main stages across ASCO.

Read More »

Coping with Cancer

“When Your Personal War On Cancer is Exhausting”

By Susan Gubar on New York Times Well Blog — While dealing with a chronic or terminal condition, however, some people decide to reject medical options that damage the life left to be lived. Those who cease and desist should not be considered cowards, deserters, losers or quitters. Conscientious objectors, they have made their separate peace — if not with cancer, then with their living and their dying. Wearied by treatment fatigue, they want their remaining days or months to consist of more than a war against cancer.

Read More »

More From “What Caught Our Eye” »

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What Caught Our Eye: Next Steps for the ACA; Gottlieb’s Confirmation; ASCO Statement on Right-to-Try; Gene Mutations in Childhood Survivors

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What Caught Our Eye (WCOE), April 7, 2017
What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.

In the Spotlight

Cancer Survivor, Rep. Jamie Raskin (D-MD), speaks on the House floor about the importance of medical research funding

Affordable Care Act

“GOP Has No Choice But To Keep Pushing Health Care Rock Up The Hill”

Via Kaiser Health News — Chris Jacobs, a longtime Republican staff member explained that while the GOP mantra has been “repeal and replace” for several years, “there are differences between the repealers and the replacers. They are two fundamentally distinct approaches separated by the word ‘and.’”

“Kaiser Health Tracking Poll – April 2017: The Fall of the AHCA and Next Steps for the ACA”

Some key findings of the most recent Kaiser tracking poll: the public thinks it’s a “good thing” that the AHCA failed, believes President Trump and the Republican party are responsible for problems with the ACA going forward, and want to see the Trump administration make the ACA work for consumers.

“Despite divided views towards the 2010 health law, three-fourths of the public think President Trump and his administration should do what they can to make the current health care law work – including a majority of Democrats and independents and half (51 percent) of Republicans.”

“Iowa just lost half its Obamacare insurers”

Via Vox.com — “Health insurers across the country are making decisions right now about whether they want to participate in Obamacare’s marketplace next year. These Iowa insurers are among the first to make up their minds — and have decided that the Obamacare marketplaces are just too risky of an investment in an era of repeal and replace.”

Cancer Policy

“FDA nominee says agency must strike right balance between risk, regulation”

Via Stat News — Scott Gottlieb, Nominee for FDA Commissioner: “I know what’s at stake here. People’s lives are literally on the line when it comes to the decisions FDA makes, its oversight, and its enforcement of Congress’s laws.”

“ASCO Supports Strengthening FDA Expanded Access Program, Opposes Right-to-Try Measures as Ineffective and Potentially Harmful to Patients”

Via an ASCO Statement — “ASCO supports access to investigational drugs outside of clinical trials when there are adequate patient protections in place. However, ASCO is concerned that existing and proposed RTT laws do not adequately protect patients, do little to facilitate patient access to such therapies, and potentially interfere with recent reforms that are already streamlining patients’ access to investigational agents.”

“Why Medications Are So Expensive (In One Map)”

Coping with Cancer

“Many Childhood Cancer Survivors Carry Mutations in Cancer Predisposition Genes, Raising Risk of Later Disease”

Via an AACR News Release — “The remarkable advances realized over the past four decades in the treatment and survival of pediatric cancer patients is one of the most notable success stories within the cancer field,” said the study’s co-senior author, Les Robison, PhD, chair of the Department of Epidemiology and Cancer Control at St. Jude Children’s Research Hospital in Memphis, Tennessee. “However, childhood cancer survivors are at increased risk of subsequent neoplasms, largely considered to be therapy-related.”

More From “What Caught Our Eye” »

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What Caught Our Eye: A Cancer Survivor’s Comic, ACA Repeal Back on GOP Agenda, New Susan Gubar Piece, Past NCI Chief on Trump’s NIH Cuts

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What Caught Our Eye (WCOE), March 31, 2017
What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.

In the Spotlight

“I have cancer. This comic shows how much pressure I feel to be a hero.”

Affordable Care Act

“Here’s the Bipartisan Path Forward on Health Care”

Andy Slavitt, former acting director of CMS, argues that the failure of Trumpcare last week presents the opportunity to end the divisiveness that hampered the Obamacare era and move forward in a bipartisan direction that focuses not on destructive rhetoric, but squarely on reducing premiums and expanding access for all Americans.

Republicans say Affordable Care Act is back on agenda

Via New York Times — “Under extreme pressure from conservative activists, House Republican leaders and the White House have restarted negotiations on legislation to repeal the Affordable Care Act.
But efforts to revive the legislation in the House could take weeks, lawmakers conceded, as Congress moves forward with a full plate of other time-consuming issues. And the renewed push did not meet with much enthusiasm from Senate Republicans, who said they had other priorities at the moment.”

Coping with Cancer

ASCO’s State of Cancer Care Report Emphasizes Persisting Barriers to Care

Via Cancer Therapy Advisor — “Despite important gains in health insurance rates and cancer science, barriers to patient access to care remain a problem, according to the American Society of Clinical Oncology (ASCO) 2017 report on the state of cancer care. The report was published in the Journal of Oncology Practice.”

Targeted Cancer Drug May Also Help Protect Fertility, Study Suggests

Via the National Cancer Institute — “Findings from a new study in mice suggest that a class of targeted cancer drugs may have another use in some younger women being treated for cancer: preserving their fertility.”

The Haves and Have Nots of Cancer Care

A new column by friend of NCCS Susan Gubar, via New York Times Well Blog — “Prevention and early detection should not be bonuses available only to those who can pay for expensive medical coverage.”

New cancer treatments should inform patients about quality of life beyond side effects

Via Stat News — “I would like to see more companies explore cancer therapies or regimens that put a premium on patients’ satisfaction with their lives during treatment. At the very least, quality-of-life information should be made available to clinicians and patients so they can understand and weigh all aspects of various treatment options.”

Cancer Policy

Why Trumps NIH Cuts Should Worry Us

Via New York Times — “It would be a mistake to be complacent about the president’s proposal, because it is likely to have real consequences. Yes, some have said that the proposed cut to the N.I.H. will be dead on arrival in Congress. But the president’s budget proposal is still important: The administration’s representatives will need to defend it at hearings, and it could be the starting point for negotiations among appropriators. It is not difficult to imagine a compromise in which the N.I.H. suffers a steep reduction.”

U.S. judge finds that Aetna deceived the public about its reasons for quitting Obamacare

Via the L.A. Times — “Aetna claimed this summer that it was pulling out of all but four of the 15 states where it was providing Obamacare individual insurance because of a business decision — it was simply losing too much money on the Obamacare exchanges. Now a federal judge has ruled that that was a rank falsehood.”

More From “What Caught Our Eye” »

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Ask Your Oncologist About Clinical Drug Trials

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Laura Holmes Haddad

Laura Holmes Haddad

Post by Laura Holmes Haddad
Stage IV Inflammatory Breast Cancer Survivor

If you had asked me in December 2012 if I would ever participate in a clinical drug trial, my answer would have been a resounding, “No.” The very word “trial” scared me off; I didn’t want to be a guinea pig, a test subject. I wanted proven medicine.

I was just about to begin chemotherapy to treat Stage IV inflammatory breast cancer. I had consulted three medical centers, and the words “clinical trial” were not mentioned, until suddenly they were. One month and two rounds of chemotherapy had failed, and I had no other option: I was 37, I had two kids under the age of five, and the tumor in my left breast was growing, and an oncologist at University of California, San Francisco told me a clinical trial would be the next step (which I found out later meant my only option). My “no” immediately turned to “yes.” But I didn’t know exactly what the term meant, what a trial entailed, or just how complicated it is to access clinical drug trials.

In February 2013, I became Trial Subject #985. I was accepted onto a Phase II non-placebo, non-randomized clinical drug trial for a PARP-inhibitor drug. The unfortunate part for me was that the closest medical center administering my particular trial was about 400 miles south of our home. Every week for six months I had to travel to another hospital to receive treatment. This was stressful, to put it mildly; the financial and emotional toll was high, but ultimately worth it. The drug was working to shrink my tumor, and I then returned to UCSF for surgeries and then radiation therapy at my local cancer center. Since August 2013, I am NED (no evidence of disease), another word for remission.

My family and I were quickly given a crash course in clinical drug trials in the U.S., and this is what we learned:

  • Your medical provider (oncologist) must help you gain access to a clinical drug trial. He or she petitions the drug company (the “sponsor” of the trial) to get their patient (you) accepted into the trial. Your oncologist can access databases that list open clinical drug trials in the U.S., but you and your caregivers can do your own research as well. A good place to start is the National Cancer Institute (NCI) website: Cancer.gov: Find NCI-Supported Clinical Trials
  • There are strict rules around participating in a clinical drug trial (called protocols) and they absolutely must be followed. All of the rules are in the documents you will sign before you begin the trial. That said, you are volunteering for this treatment and are free to leave the trial at any time.
  • Don’t let finances prevent you from pursuing a clinical trial option. Under the ACA, insurance companies must cover the routine costs of an in-network provider associated with an approved clinical trial. There are many, many resources in the U.S. that can help with financial issues, including the cost of traveling for treatment.
  • I was afraid of the unknown. Once I had more information—reliable, trustworthy information—I understood the risks and benefits. I had to put fear aside and look at the facts. A good place for basic trial information is the American Society of Clinical Oncology (ASCO) website: Cancer.net | Clinical Trials

There is no doubt that I am alive today due to the drug trial I participated in, but it was more than getting access to the drug. Had I not had the medical support and family support to help me navigate this complicated aspect of cancer care, I would not have survived. As cancer patients, we need information and support in order to make the best decisions about our treatment. Don’t stop seeking information and don’t stop asking questions. It’s your cancer, and your body.

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About the Author

Laura Holmes Haddad is a writer and Stage IV inflammatory breast cancer survivor from California. Her book This is Cancer: Everything You Need to Know, from the Waiting Room to the Bedroom was published In October 2016.

The views & opinions expressed in any guest post featured on our site are those of the guest speaker and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Share Your ACA Story

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Read an Example ACA Story

Photo Credit Olivier Douliery

Lisa Gray, CML Survivor

“In December, I enrolled in a plan that reduced my premium by more than $300 and had no prescription cap. By eliminating pre-existing conditions and providing access to affordable health coverage, the ACA has saved my life.”

Read more »

We at NCCS are carefully monitoring the transition to the Trump administration and what it means for cancer survivors, patients, and families.

One immediate concern is access to health insurance, given promises to repeal the Affordable Care Act (ACA) and uncertainty about what, if anything, would replace it. The ACA has allowed cancer patients and survivors to purchase insurance through the exchanges, and it has afforded protections related to out-of-pocket expenses, lifetime caps, and pre-existing conditions.

We need YOUR help to identify stories of cancer survivors who have benefited from the ACA, so we can share these with policymakers and protect the important provisions of the ACA that help cancer survivors.

Use the form below to share your ACA story with us.

For more information about cancer and the ACA, read this resource from Cancer.Net »

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Support our work and make a gift to NCCS today »

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NCCS Presents the Inaugural Ellen Stovall Award to Douglas W. Blayney, MD, FACP (Video)

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The Ellen Stovall Award: Jonathan Stovall, Douglas W. Blayney, MD, and Shelley Fuld Nasso

From left to right: Jonathan Stovall, Douglas W. Blayney, and Shelley Fuld Nasso

At the National Coalition for Cancer Survivorship’s (NCCS) 30th Anniversary Reception on October 13, 2016, NCCS presented the inaugural Ellen Stovall Award for Leadership in Patient-Centered Care. The award was created to honor former NCCS CEO Ellen Stovall, who led the organization for more than twenty years and passed away in January 2016 from complications related to her cancer treatments.

The award recipient was Douglas W. Blayney, MD, FACP, past president of the American Society of Clinical Oncology (ASCO) and who worked closely with Ellen Stovall for many years. Together they helped initiate the ASCO Quality Symposium, which has become the leading cancer quality meeting in the world.

Shelley Fuld Nasso Remembers Ellen Stovall

NCCS CEO Shelley Fuld Nasso thanked the attendees to the NCCS 30th anniversary reception, many of them current and former NCCS staff and colleagues of Ms. Stovall, for their contributions to the field of cancer survivorship. “Everyone in this room today has helped in some way have an impact on our work over the past 30 years and on the lives of people with cancer,” Ms. Fuld Nasso said.

She continued, “As we commemorate this milestone in our history, we also, of course, have to recognize the devastating loss that we at NCCS felt, and all of us in the cancer community, when Ellen Stovall passed away earlier this year–our former CEO, dear friend, and mentor… Ellen left an indelible mark on all of us… She’s really our guiding light at NCCS and I often find myself thinking, ‘What would Ellen do?'” After a short video tribute to Ellen’s life and advocacy, Shelley invited Ellen Stovall’s son, Jonathan Stovall, on stage to present the award named in his mother’s honor.

Dr. Blayney Accepts the Ellen Stovall Award

In her introduction, Shelley Fuld Nasso highlighted the collaborative efforts of Dr. Blayney and Ms. Stovall. “Dr. Blayney did not shy away from Ellen’s demands that much more needed to be done to ensure access to patient-centered care, or her insistence that patient satisfaction with their cancer care really did matter. Instead, he was a dedicated partner in these efforts.” She continued, “When Ellen and Doug were working shoulder to shoulder on a wide range of cancer quality improvement efforts, they were pioneers. Not all their peers supported, or even saw the point of all their dogged efforts to improve quality.”

Dr. Blayney accepted the inaugural award and honored Ms. Stovall’s work and advocacy for cancer survivors in his remarks. “Ellen was a living reminder of cancer survivorship,” said Dr. Blayney. “She lived her life with purpose and never-failing grace. She articulated for so many audiences, the purpose of our work, and reminded us that it was always about the patient. I am honored with the Stovall award.”

Douglas W. Blayney, MD, FACP is a professor of medicine at the Stanford Comprehensive Cancer Center. His clinical interest is breast cancer, and his operational interests and research focuses on quality improvement in cancer care systems, improvement of the patient experience, and the optimum use of information technology to enhance these missions. He is past president of the American Society of Clinical Oncology (ASCO), and was the founding editor-in-chief of ASCO’s Journal of Oncology Practice.

The Ellen Stovall Award: 2017 and Beyond

At the reception, NCCS announced that beginning in 2017, the Ellen Stovall Award will be an annual, nationwide competition. It will be the first call to action that specifically urges cancer survivors and caregivers to nominate providers who are making dramatic improvements in how they care for cancer patients and their families. With recent changes in care towards value-based reimbursements and the Oncology Care Model, NCCS seeks to highlight providers who are proactively and successfully embracing patient-focused care that is recognized by the very patients they are serving. Dr. Blayney will serve as co-chair of an advisory committee to establish the award’s criteria and evaluate nominations.

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News You Didn’t Hear From ASCO’s Annual Meeting

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Shelley Fuld Nasso Headshot

Post by NCCS CEO Shelley Fuld Nasso

We are nearing the end of the 2016 ASCO Annual Meeting in Chicago and looking forward to Vice President Joe Biden’s address on the National Cancer Moonshot Initiative this afternoon. The ASCO Annual Meeting provides updates on treatment advances and is followed by patients, physicians, biotech companies, and investors. Immuno-oncology is once again the hot topic here, with about a third of the abstracts being presented.

While advances in treatment options are exciting and good news for patients, we at NCCS are also interested in advances in symptom management for cancer survivors during and after their treatment. I want to share news you probably didn’t hear about from two sessions I attended yesterday that addressed palliative care and survivorship care.

Dr. Areej El-Jawahri from Massachusetts General Hospital shared the results of a randomized controlled trial where palliative care was incorporated for bone marrow transplant (BMT) patients. Incorporation of palliative care helped patients on a particularly difficult treatment path by improving quality of life and reducing depression, anxiety, and other symptoms. It was one of the first studies to show that palliative care was effective in a curative setting – other palliative care studies have shown improvements for patients with advanced cancer. This study further disproves the misconception that palliative care is just for people who are at or near the end of life. Instead, the study is another reminder that palliative care can improve quality of life for anyone with a serious illness.

Furthering attendees’ understanding of palliative care, Dr. Arif Kamal discussed the history of palliative care in oncology, the role of palliative care specialists in ensuring that patients’ goals are met, and the communication skills needed to provide quality cancer care. He pointed out that effective doctor-patient communication is a learned, not innate skill; that we have a shortage of trained palliative care specialists; and that elements of palliative care must be included in oncology practice. This is critically important, as not all cancer patients will have access to a palliative care specialist.

Dr. Kamal joined us in April for our Cancer Policy Roundtable, and I am grateful for his approach to communicating with patients about their disease with empathy and compassion. He ended his presentation on a high note with the question, “What if I told you that talking about the hard stuff IS high quality care?”

Dr. Michael Halpern opened the survivorship session by addressing the question, “Is every patient’s journey the same?” He answered that with a definitive “no”, showing that there is wide variation in individuals’ experience of survivorship, the level of support they need, and the availability of that care.

Mary McCabe, RN, MA, Director of the Cancer Survivorship Initiative at Memorial Sloan Kettering Cancer Center and an NCCS Cancer Policy Advisor, talked about models of care for survivorship, based on both the needs of different survivors and the settings for care. She pointed out that there is often finger-pointing and lack of accountability between the oncology team and the primary care provider for a patient’s survivorship care.

Dr. Mary Ann Burg, an oncology social worker, discussed disparities in survivorship care related to financial constraints for cancer survivors. She warned that if we only apply value frameworks and cost/benefit analyses to patients with high risk of financial issues, we will increase the disparities in outcomes between people with high and low levels of financial resources.

Dr. Halpern wrapped up the session by discussing barriers to survivorship care, including reimbursement, a shortage of trained workforce to deliver survivorship care, and the lack of a cohesive health care system resulting in fragmented, uncoordinated care.

The ASCO Annual Meeting is a busy and exciting time, and it is gratifying to have the opportunity to hear from researchers and clinicians who are working to improve patients’ experience with cancer, both during treatment and afterward.

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WCOE: Peter Ubel Explores Healthcare Spending, Surgery Volume & Care Quality, Dr. Dizon Says “I Don’t Know,” and The Survivor Running Biden’s Moonshot

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What Caught Our Eye (WCOE)
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