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Enrollment Graphic

The Affordable Care Act Open Enrollment Period: Key Points on Plan Selection and Enrollment Deadlines

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Enrollment GraphicThe 2016 Affordable Care Act (ACA) open enrollment period ends January 31.  There are some other important things to know about enrollment deadlines, especially if you already have an ACA plan or Medicaid coverage through the ACA.

Key points on deadlines for renewing or getting health insurance

  • If you need health insurance, you can get a plan through the Affordable Care Act marketplace!  Sign up by Tuesday, December 15 to get coverage that starts January 1.  If you enroll in a plan after that date, your coverage will begin as early as February 2016.
  • If you already have a health insurance through the Affordable Care Act marketplace and want to change plans for next year, you must change plans by Tuesday, December 15.
  • If you have Medicaid coverage through the Affordable Care Act, be sure to renew your eligibility.  Check with your state’s Medicaid office if you have any questions about how to renew your coverage.

Key points on plan selection

  • When choosing a plan, think about the benefits you get from your insurance plan: how much will the plan pay for your care, including visits to your doctors, surgeries, radiation, drugs, and hospital stays?
  • Check to see what physicians and hospitals are in the plan’s network and what drugs are on the plan’s formulary.
  • Think also about what the plan will cost you in premiums, deductibles, and your share of the cost of doctor visits, drugs, and hospital stays.
    • The plan with the lowest premium may not be the cheapest for you.
    • Millions of Americans are eligible for help in paying the premium and for help in paying out-of-pocket costs (such as co-pays for visits to the doctor and co-insurance for a prescription).
      • If you are eligible for help with your out-of-pocket costs, you must choose a Silver Plan.

There are many resources to get help in choosing a plan. Help us share this post and list of resources.

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Video Post: Dr. Fred Smith Discusses Payment Systems in Cancer Care

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Earlier this year, Dr. Fred Smith participated in a National Coalition for Cancer Survivorship Cancer Policy Roundtable panel addressing the question of whether new cancer care payment systems foster the delivery of the right treatment at the right time.

VIDEO TRANSCRIPT:

I’m Fred Smith, I’m a practicing medical oncologist in the Washington community area and have been doing so for the past 30 years. Prior to that, I was in academic practice at Georgetown University’s Lombardi Cancer Research Center.

The major challenge that all community oncologists would admit to at the present time is the concern about delivering state of the art, cutting-edge care and being reimbursed for this. Many community oncologists have quit the practice of medical oncology in the community to join health care systems because of the red ink, if you will, of the drug expenses. I think that, in terms of trying to keep to date, we like to offer cutting-edge therapy and sometimes, these are met with delays in reimbursement.

We are appropriately asked to request prior authorization for a plan of treatment. I think that is a very reasonable thing to do. And we all try to conform to the National Comprehensive Cancer Network clinical guidelines, but even doing so, we’re often left with delays in reimbursement that has led to a number of my colleagues closing their practices to join a health care system.

I think in terms of looking forward, the ideas of bundling for payment leaves many of us concerned that we won’t be able to mete out the same care. In terms of what was discussed by some of the other panelists, Dr. Newcomer and Dr. Kline, of paying for episodes was a lot more palatable. And if that can be taken to the community practitioner–the community practitioner could get rid of the vagaries of retailing chemotheraputic agents themselves… I think that would lead to a much more comfortable practice of medical oncology in this day and era.

About the contributor: Dr. Smith is a practicing Medical Oncologist in the DC Metropolitan Area and holds a Clinical appointment as Associate Professor of Medicine at Georgetown University having pursued five years of academic research during that tenure at the Lombardi Cancer Research Center. He has contributed several publications during that time and continues to pursue a keen interest in Clinical research in Breast, Lung, Colorectal, Ovarian and Lymphoma in his community practice.  As a consequence, he remains very much in touch with the realities of patient care while maintaining a cutting-edge cancer care focused on the comfort and satisfaction of each patient and family. He represents an excellent bridge for both the academic and private practice communities.

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

20years

Guest Post by Elizabeth J. Clark: Self-Advocacy is Critical to Quality Cancer Care

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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The tenth principle states that “The provision of psychosocial services must be safeguarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of care to determine availability of needed support and their ability to seek information and to advocate on their own behalf.”

 

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Post by Elizabeth J. Clark, PhD, ACSW, MPH

In the past twenty years, many advances have been made in ensuring quality cancer care for persons living with cancer. Individuals now have better treatments, more options, more cures, and longer periods when they are cancer-free or in remission. Enhanced insurance coverage, especially the passage of the Affordable Care Act, has contributed to innovative programming in survivorship and supportive care.

So what is still missing and what is left to do? Disparities and remnants of the dual delivery system in cancer care remain. Patients with resources can get second and third opinions, can travel to major cancer centers for the most advanced therapies, can afford exorbitant co-pays, and can secure the help and services needed. Those with limited means do not have as many options. Additionally, as cancer treatments have become more complex, health literacy has taken on heightened prominence. This further contributes to disparities in care.

All of these factors point toward an increased need for self-advocacy and advocacy on behalf of loved ones with cancer. Cancer survivors have long contended that it is through self-advocacy and personal empowerment that other identified needs (for information, intervention, and support) are met. Yet just as a digital divide exists between generations and educational levels, there also exists a divide between persons who are expert, or at least adequate, at self-advocacy, and those who are unable to direct or to be a full partner in their own care.

As health care professionals, we must support and include self-advocacy training as part of patient-centered care. This will help cancer survivors acquire the advocacy skills they need to find relevant information, to make better decisions, to communicate well with care providers, and to negotiate with employers and insurers across the care continuum. In short, we need to make certain that survivors can stand up for their rights so that they can live as fully and as well as possible after a cancer diagnosis.

For those cancer survivors who are unable to be self-advocates, we need to provide added assistance from patient navigators, oncology social workers, case managers, and care coordinators—the members of the care team most adept at providing psychosocial and supportive services and removing barriers to optimal quality of life. While we have seen progress in areas like distress screening, patient-centered care, and palliation of symptoms, they have not yet become a routine and required part of cancer care in all settings.

Looking back over the 20-year period since the Imperatives for Quality Cancer Care was published, it is apparent that progress in psychosocial and supportive care has been made. This progress needs to be safeguarded and promoted, but more is needed. We remain hopeful that initiatives like multidisciplinary teams, medical homes, and standards for patient-centered care will finally result in optimal and comprehensive care that every cancer survivor deserves.

About the Author: Elizabeth (Betsy) Clark is the President of the Start Smart Career Center. She is the former CEO of the National Association of Social Workers. Betsy is a past-president of NCCS and an author of the Cancer Survival Toolbox series on self-advocacy. She currently is Vice-Chair of the Leukemia and Lymphoma Society and serves on the Executive Committees of C-Change and the National Hospice and Palliative Care Organization. 

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

 

Ellen Goodman Acceptance Speech

Celebrating the 2015 NCCS Focus on the Care Honorees in Pictures and Video

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Last week we celebrated two individuals how have made cancer care better for survivors and their families—Dr. Richard Pazdur and Ellen Goodman. We were joined by survivors, advocates, researchers, innovators, and friends at our 2015 Focus on the Care reception in Washington, DC on Wednesday, October 21, 2015. In addition to our special attendees and honorees, we were also pleased to have Dr. Robert Califf, the Food and Drug Administration (FDA) Deputy Commissioner for Medical Products and Tobacco and President Obama’s nominee for FDA Commissioner, present Dr. Pazdur with the NCCS Public Service Leadership Award. The evening was also made special by the presence of Dr. Richard Sloan and Dr. Julia Rowland, who attended in support of the presentation of the inaugural Jessie Gruman Award for Patient Engagement to Ms. Goodman.

While receiving the Jessie Gruman Award for Patient Engagement, Ms. Goodman spoke candidly about the critical need to share our stories as our collective attitudes surrounding the experience of dying develop into a common human experience. Dr. Pazdur spoke of his work at the FDA as well as the call of the “patient cry.” Both speeches can be viewed in the videos below.

Ellen Goodman Accepts the 2015 Jessie Gruman Award for Patient Engagement
Dr. Richard Pazdur Accepts the 2015 NCCS Public Service Leadership Award
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Video Post: A Special Celebration of the Life and Advocacy of Jessie Gruman, the Founder of the Center for Advancing Health

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For more than twenty years, the National Coalition for Cancer Survivorship (NCCS) had the privilege of adapting our friend and colleague, Jessie Gruman’s important work into the development of the cancer policy work that we engage in. Jessie’s vision of patient engagement was always ahead of its time, and her books and blogs and participation in numerous conversations in our community over the years contributed enormously to the evidence we now have about the engaged/empowered patient.

The Jessie Gruman Award for Patient Engagement was established with a grant from the Center for Advancing Health (CFAH) to honor the legacy of Dr. Gruman, a tireless advocate and leader in patient empowerment.The inaugural Jessie Gruman Award for Patient Engagement was presented to Ellen Goodman on October 21,2015 in Washington, DC.  Ms. Goodman is a Pulitzer Prize-winning columnist, author, and the founder of The Conversation Project, a national public health campaign and suite of tools developed to change the way people talk about and prepare for their end-of-life care.  As part of our celebration of Jessie’s life and the presentation of the Jessie Gruman Award for Patient Engagement, Jessie’s husband, Dr. Richard Sloan, and her colleague, Dr. Julia Rowland, recently spoke to us about Jessie’s driven personality and the influence of her work. We would like to share this special tribute with our readers, and extend our gratitude to Dr. Sloan and Dr. Rowland for their support.

 

 

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WCOE: Deciding About Dying, Discourse Surrounding New Mammogram Guidelines, Biden’s Commitment to Helping People with Cancer, and Breast Cancer in Developing World

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What Caught Our Eye (WCOE)
Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

 

 

20years

Twenty Years Later Blog Series: Introducing the Tenth Principle of the Imperatives for Quality Cancer Care

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This month, as part of our 20 Years Later blog series, we are revisiting the tenth principle of the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives).

The tenth principle states that “The provision of psychosocial services must be safeguarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of care to determine availability of needed support and their ability to seek information and to advocate on their own behalf.”

Twenty years ago, authors of the Imperatives warned that “psychosocial care may be seen as an adjunct, ‘value-added’ rather than an essential.” Advocates then called for increased funding of research on the psychosocial effects of a cancer diagnosis and on how the cancer care system can help survivors and families address common symptoms like anxiety, depression, and elevated stress.

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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2008 IOM Report)

In recent years, psychosocial oncology has gained traction as a critical component of quality cancer care.  In 2008, a highly influential Institute of Medicine (IOM) report described psychosocial concerns as a cause of additional suffering with the potential to weaken adherence to prescribed treatments and as a direct threat to survivors’ return to health. This spawned initiatives aimed at ensuring that patients’ care is comprehensive: treating the entire person and not just the disease. The report asserts that survivors should expect to have satisfying communication with doctors, nurses, and others treating their cancer. This includes conversations about needs for emotional and social support at critical junctures of one’s care in addition to resources to help manage the disease and treatments, as well as one’s overall health.

Fundamental to meeting the needs of the whole person is discussing emotions that may exacerbate stress.  The NCCS Know Yourself Worksheet lets patients identify their hopes, desired milestones and goals, concerns about quality of life and side effects, and more in order to arm survivors with prepared questions to discuss with their care team during a doctor visit. Other organizations like CancerCare offer counseling and other supportive services. Survivors and their caregivers can call 800-813-HOPE (4673) to talk about their worries, fears, frustrations, or any other concerns they may have.

20 Years Later

Read more posts from our “20 Years Later” series and join the conversation by sharing and leaving comments.

There are other signs of progress.  For example, the National Cancer Institute (NCI) has a number of resources to address psychosocial needs of people with cancer and their loved ones, including the expansive “Coping with Cancer” section.  The NCI-Funded Research Portfolio (NFRP) (which provides estimates for how much money NCI spends each fiscal year in different areas of research such as lung cancer and leukemia) includes in the menu of research topics categories such as “behavioral and social science,” “depression,” and “cancer survivorship.”  Thanks to the NFRP database, we can see how much funding goes to research on the psychosocial effects of a cancer diagnosis, as advocates called for twenty years ago.  A search for “psychosocial” on the NCI website leads to more than a thousand results.  Many cancer centers provide psychosocial support that is specific to the cancer diagnosis.  Today the need for psychosocial support around a cancer diagnosis is widely accepted.

As psychosocial oncology continues to develop and to make a name for itself in the cancer world, patients should know that their emotional and social needs are just as critical to their health as their medical needs to treat the cancer. This month, Diane Blum will discuss progress in the field of psychosocial oncology, and Betsy Clark, PhD will address the tenth principle from her perspective as a social worker and patient advocate. We look forward to your participating in the conversation!

 

 

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WCOE: The Dempsey Challenge, The 100 Day Project, LGBT HealthLink E-Summit, Integrating Palliative Care in Cancer Treatment, and More News

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What Caught Our Eye (WCOE)
Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

https://twitter.com/NikiBarrPhD/status/655062042769006592

 

 

NCCN

Video Post: Dr. Bob Carlson and Joan McClure Discuss the National Comprehensive Cancer Network Guidelines

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The National Comprehensive Cancer Network (NCCN) is a non-profit organization, created by an alliance of 26 leading cancer centers in the United States. At the National Coalition for Cancer Survivorship’s 2015 Spring Cancer Policy Roundtable, Dr. Bob Carlson and Joan McClure of NCCN sat down with us to talk about their organization’s Clinical Practice Guidelines. In this clip, Dr. Carlson and Ms. McClure explain the organization’s principles and detail the thorough process of evaluating new cancer treatments and how they make their recommendations for the advancement of quality cancer care.

The NCCN guidelines have been “translated” to easy-to-understand language in order to inform patients and caregivers about all of the available treatment options for their disease. They are available for free on the NCCN Patient website.

VIDEO TRANSCRIPT

Carlson: With the advent of new payment models, the NCCN guidelines will assume even greater importance in maintaining the optimal standard of care for patients with cancer. The NCCN guidelines are developed by expert, multi-disciplinary panels with patient advocacy members.

McClure: We have 49 separate panels and developed 61 difference clinical practice guidelines for treating cancer. All of our panels are multi-disciplinary. We have, as a core, medical oncologists, surgical oncologists, radiation oncologists, and pathologists on our panels but we also have other ancillary specialties as required by a particular disease site.

Carlson: The panels specifically evaluate the evidence in support of various therapies and encode those optimal, evidence-based therapies into the guidelines themselves. Important in the principles of inclusion of therapies or treatment options in the guidelines is first of all the evidence that supports the therapy and our guidelines are always annotated with the level of evidence specifically behind each recommendation.

McClure: One of the things that we are most concerned about is ensuring that the quality of our information is always up to date. So each one of our guidelines is reviewed by the multi-disciplinary teams at our member institutions at least annually and the guideline is completely reviewed by the guidelines panel. We also do interim updates when there’s a change in the data that supports various treatments that could change the standard of care. So if there’s a new agent approved by the FDA, or if a clinical, a large important clinical trial is stopped for either efficacy or toxicity, or an important publication comes out, our panel will meet on an interim basis to update the guideline. We believe in transparency, all of our guidelines and recommendations are available free of charge on our website, www.nccn.org. They’re available to clinicians, to patients, to anyone who has an interest in the guidelines free of charge.

We look at each recommendation in terms of the efficacy, the safety of the intervention, the quality and quantity of data, and the consistency of the data. And this year our panels are going to be starting to look also at the affordability of a regimen. And over the next year or so these data will become available to users of our clinical practice guidelines to allow patients and clinicians to make decisions about what is valuable to them.

Carlson: We want to include all of the options that would be most reasonable for patients and physicians to consider. We think that choice is important because the various therapies that individuals consider, or the various dimensions of therapies that an individual consider might vary from one patient to another. One patient may think that the effectiveness of the therapy is the only consideration that they would have, while another patient may be very concerned about a specific toxicity and yet another patient may be overly concerned, or be appropriately overly concerned, about cost of care. And so the maintenance of choice allows patients to make individualized treatment-based decisions. As we move into new payment models as well, having those options that define what the appropriate standard of care is means that patients and physicians can look at those options and if they select one of those options and move forward with one of those options, they may be confident that the decision is not being made strictly upon cost or some other incentive that may exist to choose one thing over the other. Again, patient choice and physician choice is central to our guidelines’ philosophy.

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About the Contributors: Robert W. Carlson, MD—Dr. Carlson is the Chief Executive Officer (CEO) at the National Comprehensive Cancer Network (NCCN). He joined NCCN as CEO in January 2013 following an esteemed history of leadership positions within the organization including, most notably, Representative to the NCCN Board of Directors, Chair of the Breast Cancer Guidelines Panel, Member and Founding Chair of the Breast Cancer Risk Reduction Guidelines Panel, and Chair of the Survivorship Guidelines Panel. Joan S. McClure, MS—Ms. McClure is Senior Vice President of Clinical Information and Publications for the National Comprehensive Cancer Network (NCCN).  Ms. McClure’s group develops the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), associated NCCN Guidelines for Patients®, the NCCN Drugs & Biologics Compendium(NCCN Compendium®), NCCN Chemotherapy Orders Templates (NCCN Templates®), the NCCN Biomarkers Compendium®, and JNCCN — Journal of the National Comprehensive Cancer Network. Ms. McClure also serves as an Associate Editor for JNCCN. 

The views & opinions expressed in any guest post featured on our site are those of the guest author 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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Metastatic Breast Cancer: A Student’s Perspective

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Tyler Trahan

Guest Post by Tyler J. Trahan, M.Sc.

Recently I had the privilege of attending “A Journey of Courage and Hope: The Johns Hopkins Metastatic Breast Cancer Retreat for Couples.” Facilitated by a renowned leader in patient-centered breast cancer care, Lillie Shockney, this unique retreat for patients and their spouses explores the resources to cope physically, financially, and emotionally with the chronic nature of metastatic breast cancer diagnosis and treatment. It engages participants in discussions about end-of-life in a safe and comfortable setting and provides people an opportunity to share their stories and to build relationships with others facing the same challenges.

As a medical student, the perspective gained while observing this retreat is invaluable in providing better patient care in the future. While a majority of patients with metastatic breast cancer report having good communication with their health care team, two out of five still don’t openly discuss deeper concerns about emotional well-being, side effects, symptoms, and quality of life – factors that can alter treatment recommendations.1

During times we shared meals together, I asked patients and their spouses, “After everything you have gone through, what is one thing you wish you could express to oncologists of the future?”  Some patients needed time to think, while others reacted as if they had been waiting for the opportunity to influence care of subsequent patients.

“Information,” one replied. “I wish the doctors were more forthcoming and direct in providing information about all of the possibilities that lie ahead.”

One inherent hardship for cancer patients and their families is the immense amount of uncertainty tied to the diagnosis.  Many feel lost and aren’t even sure what questions to ask. Therefore, the desire for physicians to volunteer more information about all possible treatment options and prognoses remained a common response.

Many wished for oncologists to remain cognizant of the new world their patients are entering, one in which everyone speaks an entirely foreign language.

Word Cloud

“What’s on the mind of metastatic cancer patients” word cloud created from responses to pre-retreat survey.

A patient explained, “When we got the diagnosis, it was like we had to learn calculus again.”

Even after researching their cancer during its initial stage, the lexicon would shift as the disease progressed, and they would again find themselves frustrated with their lack of understanding.

These responses were surely powerful, but even more so was the exposure to the uncensored experiences of metastatic patients during this retreat. When you see the tears of a young mother trying to accept leaving three children behind, you quickly learn that while medication may shrink a tumor, there is yet to be a chemotherapy regimen that targets heartache. You learn that not even years of Tamoxifen can quell the vast amount of uncertainty these patients face. And while our goal as physicians is to heal our patients…does no evidence of disease mean that person is healed?

Most importantly I learned that healing stems from hope. And maybe for some, this is no longer a hope of immortality, but a hope for joy to be found in each day that remains. Patients have a right to this hope, and oncology providers have the responsibility to share in their hopes whenever possible. This is truly a partnership.

A group photo of all the attendees remains on my desk, above textbooks and board review materials, serving as a daily reminder of the humanity to be recognized in every patient I encounter. I would like to provide the promise that lessons learned from this experience will be applied to the betterment of all cancer care in the future.

About the Author: Tyler J. Trahan, MSc is a second-year medical student at Central Michigan University College of Medicine with a strong interest in patient-centered oncology care and research. His goal is to understand the inherent fears and aspirations of future patients in order to take a more active role in providing holistic care for patients and their families.

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

 

Sources Cited:

Cancer Support Community. (2012) “Open to Options™/Advanced breast cancer online survey results report.” Improving Patient-Provider Communication and Shared Decision Making Tip Sheet

 

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