National Comprehensive Cancer Network

About NCCN

NCCN Holds Patient Advocacy Summit

Jessica DeMartino, PhD, Manager, Health Policy Programs

On Tuesday, November 29, 2011, the National Comprehensive Cancer Network® (NCCN®) convened the NCCN Patient Advocacy Summit: Ensuring Optimal Care for Patients at the National Press Club in Washington, DC. This invitation-only Summit was attended by patient advocates, providers, employers, and industry representatives within the oncology community. Increasingly, treatment options for people with cancer are being influenced by public and private payors and regulatory bodies. This shift in decision-making, which has inevitably impacted the clinician’s influence over the care of his or her patients, has also raised an important question regarding who should be deciding “optimal” care for patients with cancer.

The Summit opened with remarks from William T. McGivney, PhD, Chief Executive Officer of NCCN. Dr. McGivney’s comments focused on the challenge of achieving effectiveness with efficiency in health care delivery. Dr. McGivney noted that patients and caregivers are free to choose their clinicians and their treatments to a certain extent, but when making these choices they are often asked to become epidemiologists and economists and to adjudge, not only the medical value of a treatment plan, but its economic value and consequences. Dr. McGivney also introduced the collaboration between NCCN and the National Business Group on Health to develop tools for employers to design health insurance benefit plans for cancer care for their employees.

The Patient Advocacy Summit featured three expert roundtable discussions. The first roundtable focused on the Food and Drug Administration and what reforms are needed to help patients with cancer receive timely, safe, and effective care. Panelists included Scott Gottlieb, MD, American Enterprise Institute; James Pluda, MD, Merck; Sara Radcliffe, MPH, Biotechnology Industry Organization; M. Alma Rodriguez, MD, The University of Texas MD Anderson Cancer Center; Mark Rubin, MD, Florida Cancer Specialists; and Cara Tenenbaum, Ovarian Cancer National Alliance. Conversation centered on balancing uncertainty of benefit with timely access to new drugs and biologics. The panelists discussed what expertise is available to the FDA in regard to the Oncology Drug Advisory Committee and what should constitute conflict of interest. While much uncertainty exists, the panelists agreed that every patient wants safe, effective, and affordable medications.

The second roundtable, focusing on how coverage and reimbursement impact patient care, included Joe Bailes, MD, American Society of Clinical Oncology; Al Benson III, MD, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Nancy Davenport-Ennis, Patient Advocate Foundation; Jim Frame, MD, David Lee Cancer Center; Pam Germain, MBA, Roswell Park Cancer Institute; Len Lichtenfeld, MD, American Cancer Society; Michelle Martin, MBA, CBS Corporation; and Sam Silver, MD, PhD, University of Michigan Comprehensive Cancer Center as panelists. The panelists agreed that the resource needs of patients are large and can be overwhelming for physicians, their staffs, and patient advocacy groups to meet. These stakeholders wish to ensure that patients receive the care they need in spite of their insurance coverage and its financial implications.

Al Benson III, MD, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Nancy Davenport-Ennis, Patient Advocate Foundation; Jim Frame, MD, David Lee Cancer Center; Ray Muller, MS, RPh, Memorial Sloan-Kettering Cancer Center; and Diana Rowden, Susan G. Komen for the Cure participated in the final roundtable of the day. The panelists discussed how clinical decision-making can be challenged in the face of issues such as drug shortages, coverage and reimbursement problems, and other policy concerns.

A more detailed summary of the Summit will be available at in the New Year.