Newswise — ORLANDO, FL [April 15, 2019] — Jeffrey Backer, MD, a cancer survivor and doctor at Emergency Physicians of Central Florida, shared his story with a room full of oncology professionals at the NCCN 2019 Annual Conference in Orlando, hosted by the National Comprehensive Cancer Network® (NCCN®). He was joined by nurse coordinator Alix Beaupierre, BSN, RN, OCN®, in a conversation that was moderated by Frederick L. Locke, MD, both from Moffitt Cancer Center.
“Being a participant in a clinical trial is scary and daunting, despite my medical training and years of practice,” said Dr. Backer, who was initially treated for aggressive diffuse b-cell lymphoma in 2014. After his second relapse in 2016, he pursued chimeric antigen receptor (CAR) T-cell therapy at Moffitt. Dr. Backer described having to sign a 27-page consent form he barely read before the procedure, plus repeat instances of cytopenia and lingering immune system issues afterwards. Still, he described CAR T-cell therapy as a “miracle treatment” that saved his life, and even allowed him to go back to work in the ER.
He advised fellow aggressive lymphoma patients to “always have a ‘plan B.’ In this day and age, plan B might not be chemotherapy, it could be immunotherapy.”
Beaupierre agreed that Moffitt had a difficult start providing appropriate patient and family information to those seeking CAR T-cell therapy, but they learned quickly. Initially patients had that overwhelming 27-page consent form to review without one-to-one education time with a nurse. Now patient and family education is provided and reviewed with each patient by a nurse, in the format of easily readable 1-2-page handouts, and has further evolved to include a calendar so patients and their caregivers have a visual and tangible tool outlining the timeline of care. They have begun implementing peer-to-peer counseling, connecting new patients to others who’ve been through the process already. The patient and family experience has been improved due to Moffitt’s nursing team’s efforts to provide dedication education on the common side effects for CAR T-cell therapy, such as high fevers, neurotoxicity, and other potentially life-threatening symptoms that can occur shortly after treatment.
Dr. Locke made a point to say that the side effects are generally manageable[1]. He also assured community clinicians that they have an important role to play with their patients before and after immunotherapy, but asked that they refer their patients to centers of excellence for CAR T-cell therapy as early as possible—possibly even as soon as the first line of treatment fails to control lymphoma—because the process of planning, and then preparing T-cells can take a long time.
The coverage and reimbursement process can be another source of delays and difficulties. Immediately following the keynote conversation, NCCN hosted a roundtable discussion focused on how to increase access to innovative therapies, and opportunities to break down any unnecessary barriers to care.
The NCCN Roundtable Discussion: Emerging Issues in Oncology—Ensuring Access to, and Delivery of, Innovative Therapies and Patient-Centered Care in Oncology was moderated by Clifford Goodman, PhD, Senior Vice President of The Lewin Group, and included Dr. Locke, along with the following additional panelists:
- Stefanie Joho, Research/Patient Advocate and Consultant
- Jennifer Malin, MD, PhD, United Health Group
- John W. Sweetenham, MD, Huntsman Cancer Institute at the University of Utah
- Lalan S. Wilfong, MD, Texas Oncology
The conversation focused on the impact the high cost of care is having on patients with cancer, from medication costs to hospitalization costs. The issue of adequate reimbursement for CAR T-cell therapy was also discussed, amid concerns about growing disparities for hospitals that can’t absorb the financial loss of treating someone on Medicare. Questions about acceptable profit margins along the supply chain and across the care continuum came up.
The panelists also addressed the recently-proposed National Coverage Determination (NCD) from The Centers for Medicare and Medicaid Services (CMS). As proposed, the NCD does ensure coverage, but requires the collection of data on how patients respond to treatment. This requirement ensures that immunotherapy will primarily take place at tertiary care facilities with hematopoietic cell transplantation experience, which, panelists noted, already have the infrastructure in place to manage complex cases and collect relevant data.
Dr. Sweetenham stated that he found the NCD to be a reasonable and achievable approach, calling it “short term, a very good decision.” He continued, “Patient-reported outcomes (PROs) in general may go well beyond quality-of-life issues. From what we’ve seen, we can even predict median survival based on PROs, and use them to figure out the best approach for the patient.”
Joho said she agreed on the importance of learning from the people actually being treated, “Until patients are seen as co-investigators, we’re limiting the scope of what we can learn from clinical trials.”
The NCCN 2019 Annual Conference reflected this growing role for patients and advocates through the Patient Advocacy Pavilion in the main Exhibition Hall. This year marked a new record in patient and advocacy representation, with 18 groups exhibiting at the conference, and another 10 providing materials.
There are several forums coming soon where NCCN will continue to amplify these important voices, including the NCCN Patient Advocacy Summit: Delivering Value for Patients Across the Oncology Ecosystem, which will be held at the National Press Club in Washington, D.C. on December 11. Visit NCCN.org for a list of all upcoming events, and join the ongoing conversation online at #NCCNac19.
About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 28 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so 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. By defining and advancing 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 around the world.
The NCCN Member Institutions are: Abramson Cancer Center at the University of Pennsylvania, Philadelphia, PA; 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 National Medical Center, Duarte, 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 Comprehensive Cancer Center, 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 Rogel 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.
Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news. Follow NCCN on Twitter @NCCNnews and Facebook @National.Comprehensive.Cancer.Network.
[1] For more information on how to treat these side-effects, NCCN worked with the American Society of Clinical Oncology (ASCO) on the free NCCN Guidelines for Management of Immunotherapy-Related Toxicities, and a related patient-information infographic.
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