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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.

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WCOE: NCCS and Partners at #BreakawayfromCancer, the Reality of Living with Stage 4, and Cost-Conscious Care

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

 

 

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Guest Post from The Cancer Support Community: Progress Made in Addressing the Psychosocial Needs of People Diagnosed with Cancer

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Joanne Buzaglo, Ph.D. is the Senior Vice Present of Research & Training at the Cancer Support Community.

This guest post is part of the 2015 Cancer Policy Matters “The Imperatives for Quality Cancer Care: 20 Years Later” blog series.

Although noted in the literature as early as the 1970’s, serving as the foundation for the 1982 establishment of The Wellness Community (now The Cancer Support Community) and certainly referenced in the 1995 NCCS report Imperatives for Quality Cancer Care, it was the 2008 Institute of Medicine report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, that truly elevated the awareness of the broader cancer community to the importance of caring for the social and emotional needs of patients with cancer as a part of overall quality cancer care.  Specifically, the IOM report noted that as many as 40% of patients with cancer experience moderate levels of social and emotional distress.

Over the past several years, the community has embraced this recognition and has developed a number of solutions to better serve patients. One notable example was the formation of the Alliance for Quality Psychosocial Cancer Care, which has grown into a large coalition of groups who are committed to working together to better the overall care of patients and their families.

Another highly recognized advancement is the list of Patient-Centered Standards included as a part of cancer center accreditation by the American College of Surgeons Commission on Cancer. Specifically, patients seen in an accredited cancer center must receive care that includes the provision of social and emotional care. These standards include requirements that patients have access to social and emotional support services, psychosocial distress screening, survivorship care planning and patient navigation, to name a few. We at the Cancer Support Community applaud this big step to more formally integrate the social aspects of comprehensive care.

So what is left to do? Many organizations are adding patient-centered standards to their work, including the American Society of Clinical Oncology, the Community Oncology Alliance and the Oncology Management Services, Oncology Patient Centered Medical Home to name a few. Additionally, social and emotional support is finding its way into changing care delivery models and bundled payments for overall cancer care delivery, which is very promising.

We at the Cancer Support Community applaud the work that has been done by our partners in cancer care and look forward to working together to leverage the information in the Cancer Experience Registry, an online vehicle that engages patients and caregivers to inform future priorities in research, innovative programs and health care policy, to elevate the patient voice on the importance of comprehensive care even more.

Joanne Buzaglo, Ph.D. is the Senior Vice Present of Research & Training at the Cancer Support Community, where she leads strategic initiatives that leverage the research capabilities of CSC’s global cancer patient support network through collaborations with patients, caregivers, advocacy organizations, academics, health economists and leaders in industry. Dr. Buzaglo is a behavioral health researcher and clinical psychologist with extensive experience in the development and evaluation of theoretically guided interventions designed to help patients cope with the complex challenges associated with cancer.

About the Cancer Support Community: The Cancer Support Community is the largest professionally led nonprofit network of cancer support worldwide, delivering a comprehensive menu of personalized and essential services including support groups, educational workshops, exercise, art and nutrition classes and social activities for the entire family. Through cutting-edge psychosocial, behavioral and survivorship research, the Cancer Support Community’s Research and Training Institute is helping CSC change the future of cancer care through education and training. The Cancer Support Community’s Cancer Policy Institute ensures that the voices of 13.7 million cancer survivors and their families are heard in the nation’s capital and state and local legislatures across the country. Follow the Cancer Support Community on Twitter: @CancerSupportCm

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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Celebrating Hope and Community at the Dempsey Challenge in Lewiston, Maine

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Two weeks ago I was able to represent NCCS at the Dempsey Challenge with the Amgen Breakaway from Cancer partners. Breakaway from Cancer (BFC) is a national initiative founded in 2005 by Amgen which seeks to increase awareness of the important resources available to people affected by cancer—from prevention to education and support to financial assistance and survivorship. One of the events sponsored by BFC is the Dempsey Challenge located in Lewiston, ME. The Dempsey Challenge is the primary fundraiser for The Patrick Dempsey Center for Cancer Hope & Healing (Dempsey Center) which was founded by actor Patrick Dempsey whose mother lived with ovarian cancer for 17 years and recently died in March.

DC2014FB2Over the course of the two-day event, which raised approximately $1.3 million, more than 3,000 people participated in a 5k run/walk, survivor walk, bike race, live entertainment, health and wellness expo, and much more. While representing NCCS at the Amgen BFC tent, I spoke to many members of the community who had directly benefitted from the services provided by the Dempsey Center. Their stories were full of heartache, loss, triumphs, and most importantly hope.

Hope was a major theme throughout the events. Not only is it in the name of the center, but it is interwoven in this community and it was the theme that connected every story delivered at the Dempsey Champions for Hope Celebration. At the celebration, cancer survivors told powerful stories that demonstrated the value of the services provided, free of charge, by the Dempsey Center. We heard how family therapy sessions assisted families addressing the complicated emotions spurred by a cancer diagnosis, how cooking classes help survivors establish healthy nutrition habits, and how massage has both physical and therapeutic effects after a chemotherapy treatment. At NCCS, we have always recognized the power of hope, but to hear it articulated from survivors has a lasting impact.

One story in particular followed me home from Maine. At the BFC tent, we were visited by a woman who is living with cancer, as is her twin sister. While they have the same form of cancer, her sister’s is more aggressive which requires that she be treated at a hospital about 120 miles from home. Her sister has not been able to sustain employment during her diagnosis and therefore cannot afford the transportation expense. As a result, she has been financially assisting her sister while also financially supporting her own cancer care. This situation is incredibly burdensome for both.

Another story came from an older adult who, after receiving treatment, was unable to tie her shoes, a function that most take for granted. She said the free yoga classes that were provided by the Dempsey Center were pivotal in helping her regain the strength to tie her shoes and therefore begin the process of re-establishing her independence.

All of these stories, whether stories of struggle or triumph, inform our work and policy priorities at NCCS as we advocate for quality cancer care. It is important for us that we keep our pulse on the cancer survivor community so our work stays relevant and in sync with the needs of the approximately 14.4 million Americans living today who have a history of cancer.

Thank you to the Lewiston community for sharing your stories with us.

Post by Kelsey Nepote

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It Takes a Team – Connecting with Survivors at the Amgen Tour of California

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Last week, four members of the NCCS team traveled from our home office outside of DC to join our Breakaway from Cancer partners for eight stages of an outdoor festival at the Amgen Tour of California. Our work with Breakaway from Cancer is an opportunity to get the word out about the many resources that are available for those facing a cancer diagnosis, but it also allows us to meet with patients, caregivers, and survivors to hear about their experiences with cancer. This dialogue is critical to our work and our advocacy as the voice of survivorship in national policy issues.

Breakaway PatrickActor Patrick Dempsey joins the Breakaway Mile in Thousand Oaks. See more on our Facebook page.
In speaking with hundreds of individuals over the course of the tour, it is clear that there is no one story of survivorship. Many people who speak to us are newly diagnosed, and need more information about how to navigate their care and the financial and emotional issues that accompany a diagnosis. Some survivors seek information about assessing their risk for a recurrence, or for managing the late and long-term effects of their treatment. Many inspire us with stories of advocating for their care. At one stage of the tour, a couple approached us − not to ask about the resources available to them − but to tell us about their decision to stop active treatment and find doctors who were willing to respect their wishes so that they could focus on quality of life issues. A woman described finding fertility resources after experiencing the shock of a breast cancer diagnosis while in her early thirties. A man described his coordinated transition back to his primary care doctor after his treatment for prostate cancer.

Despite these differences, one common theme emerged. When describing “good” care, people often attributed it to luck. They were “lucky” to find the right doctor who would listen to them, or they were “lucky” to have received their treatment through a provider that emphasized coordinated care.

For many, the day of diagnosis is the unluckiest day imaginable. Cancer is a statistical anomaly, a lottery that no one wants to win. As patients, caregivers, and advocates, we feel powerless in the face of such a terrible disease. However, good care should not be a matter of chance. Shared decision-making or coordinated care should not be about luck, or geography, or any other number of factors. For this reason, we continue to advocate for reforms that will close gaps in care and in quality. NCCS recently published Principles for Health Care Payment Reform to Improve Cancer Care Quality. The goal of our public policy activities is to foster a cancer care system that is evidence-based, quality-driven, patient-focused and affordable and accessible to all. In other words, all care should be “lucky.”

As the Breakaway from Cancer initiative nears its 10 year anniversary, we are taking stock in the accomplishments of a decade and looking towards the future of securing quality cancer care. We ask that you join us, by becoming a self-advocate or an advocate for others, and by engaging in the policy issues that will continue to advance quality care for all people facing a cancer diagnosis.

Breakaway from Cancer represents a partnership between Amgen and four nonprofit organizations dedicated to empowering patients with education, resources and hope, wherever they may be in the cancer care continuum.

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2012 Extraordinary Healer Award for oncology nursing finalists announced

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CURE magazine, the nation’s largest magazine for people with cancer, has announced the three finalists for the 2012 Extraordinary Healer Award for Oncology Nursing. The contest, made possible with financial support from Amgen Oncology and Breakaway from Cancer®, invited patients and their families to submit a 700-1,000 word essay describing the compassion, expertise and helpfulness a special oncology nurse exhibited toward them during their cancer journey.

This year’s finalists include Sheila Dropcho, RN, BSN, CCRP, from the Melvin and Bren Simon Cancer Center at Indiana University in Indianapolis, Ind., nominated by Greg Schilling of Greenwood, Ind., Mary Heery, APRON, AOCNS from the Smilow Family Breast Health Center at Norwalk Hospital in Norwalk, Conn., nominated by Wendy Crowther of Westport, Conn, and Andrea Solano, RNC, BSN from the University of New Mexico Hospital in Albuquerque, N.M., nominated by Cesar Quesada, also of Albuquerque, N.M.

“I’m always impressed by nurses who go to extraordinary lengths every day to support the patients they care for,” says Susan McClure, cancer survivor and publisher of CURE. “One of this year’s finalists helped a man with stage IV cancer find hope and a will to live, even though he had recently lost his wife of 30 years to cancer. Another braved a blizzard just two days before Christmas to hand deliver a packet of patient education materials to a newly diagnosed patient. The essayist had decided to postpone telling her family of her diagnosis until after the holiday but was desperate to learn as much as possible in the meantime. Our third finalist has gone to great lengths to help a child with cancer understand that his disease doesn’t define him. She has helped him feel normal even though he’s been battling cancer for 11 of his 17 years.”

The three nurse finalists and their essayists (plus one guest) will receive round-trip airfare and two-night accommodations in New Orleans, where they will be honored at a reception held in conjunction with the Oncology Nursing Society’s 37th Annual Congress on May 3, 2012. This year’s reception is expected to draw more than 700 oncology nurses. The finalists, as well as the ultimate winner, were selected by the staff of CURE Media Group based on how each essay best portrayed the inspirational and exceptional qualities of the oncology nurses, including compassion, expertise, helpfulness, and insight as well as originality and creativity of the essay itself.

Golden Globe® and Tony-award® winning actress and breast cancer survivor, Diahann Carroll, will act as the Mistress of Ceremonies. During the reception, the essayists will read their essay on-stage with their nurse standing beside them. Afterward, one of the finalist nurses will be presented with the 2012 Extraordinary Healer Award for Oncology Nursing and will also receive an all-expenses-paid spa trip for two.

“Going into my sixth year of judging this contest I knew how difficult it would be for all of us to manage the emotions that these essays invoke,” says Kathy LaTour, cancer survivor and editor-at-large of CURE. “Narrowing it down to three finalists is never easy, especially because we know that the nurses nominated spend their days taking extraordinary care of our readers. And we also know that the readers who nominated their nurse poured their heart and soul into their entries. Each year proves to be a bittersweet yet incredibly fulfilling experience.”

2012 marks the second year that Amgen Oncology and the Breakaway from Cancer initiative have sponsored the Extraordinary Healer Award. Founded in 2005 by Amgen, Breakaway from Cancer is a national initiative to increase awareness of important resources available to people affected by cancer – from prevention through survivorship.

“Nurses are the gatekeepers to empowering patients with essential information, support, and care through a confusing and overwhelming period,” said Stuart A. Arbuckle, vice president and general manager, Amgen Oncology. “We are incredibly proud to sponsor the Extraordinary Healer Award and support CURE in honoring individuals who are inspiring examples of the difference one person can make for a patient and their loved ones.”

This year’s winning essay will appear in the Summer 2012 issue of CURE, and all three finalist essays will be featured on CURE’s website, www.curetoday.com, beginning June 25, 2012. Additional information on the Extraordinary Healer Award for Oncology Nursing, including past finalist essays, pictures from last year’s reception and more, can be found online at www.curetoday.com/healeraward.

About CURE Magazine

CURE magazine is a free, award-winning publication from Dallas-based CURE Media Group-the national source for cancer patient education. By combining science and humanity, CURE helps patients, survivors and caregivers navigate the cancer journey and understand their diagnosis and treatment, while providing tools to cope during and after cancer-ultimately helping them to live the life they aspire to live. Through the magazine, an annual resource guide for the newly diagnosed, books, and a new and interactive website, CURE provides a wealth of resources for everyone on the cancer journey. For more information, visit www.curetoday.com. CURE Media Group is affiliated with McKesson Specialty Health, a division of McKesson Corporation.

About Breakaway from Cancer®

Founded in 2005, Breakaway from Cancer is designed to help empower people affected by cancer. Breakaway from Cancer supports the services of four nonprofit organizations: Prevent Cancer Foundation, Cancer Support Community (formerly known as The Wellness Community), Patient Advocate Foundation, and National Coalition for Cancer Survivorship. For more information, please visit www.breakawayfromcancer.com.

About Amgen

Amgen discovers, develops, manufactures and delivers innovative human therapeutics. A biotechnology pioneer since 1980, Amgen was one of the first companies to realize the new science’s promise by bringing safe, effective medicines from lab to manufacturing plant to patient. Amgen therapeutics have changed the practice of medicine, helping millions of people around the world in the fight against cancer, rheumatoid arthritis, bone disease and other serious illnesses. With a deep and broad pipeline of potential new medicines, Amgen remains committed to advancing science to dramatically improve people’s lives. www.amgen.com

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Cancer Advocacy Groups Discuss the Issues at ASCO

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Last month, more than 33,000 people attended the American Society of Clinical Oncology annual meeting in Chicago. Advocacy groups had a chance to meet with health care professionals and pharmaceutical industry representatives to discuss the latest issues in cancer.

The latest issue of Oncology Times features an article, “ASCO Venue Provides Forums for Various Advocacy Discussions and Sound Bites,” that recaps two events NCCS and other cancer advocacy groups participated in at the ASCO meeting: The Breakaway from Cancer Roundtable event and a forum called Advocacy in Action. NCCS President and CEO, Tom Sellers, was a panelist in both events, which focused on discussion of critical issues in cancer – from prevention through survivorship.

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Stovall Award

The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.

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The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

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