Advocates Reveal Cancer Survivorship Challenges and Resources during National Comprehensive Cancer Network’s Patient Advocacy Summit

In In The News by Barbara Jacoby0 Comments

Cancer survivors and patient advocates joined clinicians, employers, policy makers, and pharmaceutical and biotech industry representatives to address survivorship in cancer care.

The National Comprehensive Cancer Network (NCCN®) convened a Patient Advocacy Summit in Washington, D.C., on December 1, to examine the most pressing issues facing cancer survivors and their caretakers and discuss available resources. Survivors and patient advocates were joined by employers, clinicians, policy makers, and pharmaceutical and biotech industry representatives in front of an audience of more than 150 people.

“Living through and beyond a cancer diagnosis can have a profound effect on people’s physical, psychological, social, economic, and spiritual well-being,” said Robert Carlson, MD, CEO, NCCN, who provided opening and closing remarks. “Providing the best care for these individuals — especially those diagnosed at a very young age — extends well beyond the initial phase of treatment. The good news is that patients are living longer after diagnosis; that means we need to make sure we’re prepared for any long term concerns.”

The first panel focused specifically on the patient perspective, and was comprised of the following speakers:

  • Kendall Bergman, MA, LiveSTRONG
  • Yelak Biru, Cancer Survivor
  • George Dahlman, JD, Children’s Cause for Cancer Advocacy
  • Andi Dwyer, BS, Fight Colorectal Cancer
  • Linda House, RN, BSN, MSM, Cancer Support Community
  • Merel Grey Nissenberg, Esq., National Alliance of State Prostate Cancer Coalitions

Before delving into issues like survivorship care plans, palliative care, pain management, chronic side effects, and financial toxicity, the panelists discussed the very concept of “survivorship”.

“The word ‘survivor’ may imply that treatment has concluded, but for many cancers, survivors actually need ongoing treatment for the rest of their lives,” explained Biru, who was diagnosed with Multiple Myeloma 22 years ago. “Some people find the word too passive. They may, understandably, prefer to call themselves warriors.”

The second panel included the following representatives from various facets of health care:

  • Ken Braun, Employers Health Coalition
  • Crystal Denlinger, MD, FACP, Fox Chase Cancer Center
  • Dorothy Phillips, Florida Society of Clinical Oncology
  • Julia Rowland, PhD, National Cancer Institute: Office of Cancer Survivorship
  • Chris Lieu, MD, University of Colorado Cancer Center
  • Richard Woodman, MD, Novartis

They discussed novel survivorship outcomes, and the desire for treatments that leave “minimal residual disease” and lead to “treatment-free remission.”

“From the industry’s perspective, we’re trying to be forward-thinking about long term care management and maintaining remission,” said Dr. Woodman. “Many cancers become chronic diseases and require multiple lines of therapy. Novel survivorship is about treatment-free intervals, and reducing the need for ongoing medication.”

“It’s also very important to determine who handles the ongoing coordination of care for survivors,” according to Dr. Denlinger. “Preventive health and cancer surveillance needs change over time. Care management generally shifts from oncologists to primary care physicians, but it needs to be done in an integrated way, so survivors have all of their health care needs addressed.”

The topic of disparities was another key issue for the panel, specifically regarding the different needs of urban and rural populations and people across socio-economic statuses. When it comes to racial minorities, panelists were concerned about gaps in data, and agreed more outreach and study is needed for underserved communities. The panelists also discussed the impact of aging baby boomers and the growing survivorship population. Both panels were moderated by Clifford Goodman, PhD, The Lewin Group.

There were additional presentations from the following speakers throughout the event:

  • Katie Brown, OPN-CG, LUNGevity Foundation
  • Sarah Cassidy, Cancer Hope Network
  • Janine Guglielmino, MA, Living Beyond Breast Cancer
  • Joan McClure, MS, NCCN
  • Dan Miller, JD, Live by Living
  • Megan Murphy, National Ovarian Cancer Coalition

The survivors and advocacy group representatives offered insights from their own experiences, and provided updates on resources for people with cancer.

NCCN will host three policy summits in Washington, D.C. in 2018, as well as an emerging issues roundtable on value-based healthcare models during the 23rd NCCN Annual Conference in Orlando next March. For more information, visit nccn.org/policy.

To tweet about the forum, click here, and join the conversation on Twitter by following @NCCNPolicy.

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About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.

The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.

Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.

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