NATIONAL PATIENT ADVOCATE FOUNDATION

Participants of Patient Congress III left with a sense of accom-plishment, a determination to stay involved with the political process, and a first-hand under-standing of how advocacy plays a vital role in the mission of NPAF to serve patients across America.

Patient Congress III Brings NPAF Message to Capitol Hill
Continued from page 1

This was followed by a briefing from key Congressional staff on the 2002 health legislative agenda and an in-depth discussion of the NPAF policy agenda. Pearl Moore, Chief Executive of the Oncology Nursing Society discussed the changing role of oncology nursing and the significant impact nurses have on the delivery of quality cancer care. Rep. Sue Myrick (R-NC) delivered an inspiring message on the need for enacting managed care reform legislation this year. Attendees then traveled to Capitol Hill to meet with lawmakers and discuss the NPAF legislative agenda for 2002 (see related article).

That evening, Patient Congress III re-convened for a night of enlightenment and entertainment. Rep. John Shadegg (R-AZ) and Rep. Charlie Norwood (R-GA), two leaders in the House of Representatives on managed care reform legislation, gave an update on progress being made to craft an agreement between Congress and the Administration on this important health policy initiative. Gary Reedy, President of Ortho Biotech Products, spoke on the essential role that caregivers play in the lives of patients confronting cancer. He addressed the National Caregiver Program that OrthoBiotech Products offers throughout the country. Mary McGovern, Director of Advocacy Programs, directs this national program through her work with patent advocacy organizations throughout the country. Dr. Greg Curt, Clinical Director of the National Cancer Institute, provided the latest scientific data on cancer-related fatigue, a condition that is extremely debilitating for many cancer patients undergoing chemotherapy. Margrit Esser Porter, cancer survivor and author of the nationally acclaimed book “Hope Lives” brought a message of optimism and inspiration. The evening closed with the remarkable talents of national recording artist Wintley Phipps, whose songs of patriotism left few dry eyes in the grand ballroom.

Patient Congress III participants were back on Capitol Hill early Thursday morning to conduct more meetings with lawmakers and staff. Patient Congress III re-convened at the Capitol Hill Club for the annual Congressional Awards Luncheon. This year, 20 members of Congress and Administration officials were the recipients of the NPAF National Humanitarian Health Care Awards, that recognize leaders for their extraordinary commitment to health care reform legislation and their tireless efforts to ensure improved access to the health care delivery system. The keynote speaker for the luncheon was Senator John Breaux (D-LA), whose message of bipartisanship and compromise clearly resonated with the audience. Lloyd Everson, President of U.S. Oncology, presented an overview of the complexities confronting oncology practices in the community setting in providing quality cancer care in an ever-changing Medicare reimbursement environment. Dr. Everson sited data supporting the need for Congressional proposals to simultaneously address both the issue of prescription drug and related practice expense reimbursement.

Carole Miller, M.D., Associate Professor in Oncology at Johns Hopkins University discussed the process involved in the development of new cancer therapies. Edith Perez, Medical Oncology at Mayo Clinic in Jacksonville, Florida provided guests with an update on the latest in breast cancer research, education, detection and treatment. Following the luncheon, it was back to Capitol Hill to conclude meetings with elected officials. Over two days, more than 150 meetings took place, many with Members of the United States House of Representatives and the United States Senate. Words such as “awesome,” “meaningful,” and “patriotic” were used by attendees to describe their experiences of meeting with Members of Congress and, for many, their first political advocacy experience.

Upon returning from Capitol Hill, attendees had the opportunity to meet with representatives from 17 organizations in the cancer advocacy community at the Cancer Leadership Council exhibition. That evening, participants were entertained by Jill Eikenberry and Michael Tucker, stars of the hit television show L.A. Law, who shared their perspectives on how cancer impacted their lives. Dr. Bill McGivney, CEO of the National Comprehensive Cancer Network and a former executive with Aetna Healthcare presented the “Seven Commandments” that were utilized in making coverage decisions during his tenure at Aetna. His presentation highlighted the fundamental principle that decisions for patient care need to reside with the patient and the physician, and that health plans should seek to support those decisions within the language of the patient’s health plan. His remarks were enthusiastically endorsed by the attendees. Dr. Peter Shaw, Associate Director of Pharmacogenomics of Bristol-Myers Squibb, described research that aims to identify new targets and to discover marker genes that can be used to predict the efficacy of drugs to treat cancer and other diseases. This research holds great promise for increasing patient responsiveness to therapy by reducing exposure to agents that may not be pharmacogenomically compatible to the marker genes of the patient.

Patient Congress III concluded on Friday morning with a series of informative and motivational speakers. Patty Delaney and JoAnn Minor of the U.S. Food and Drug Administration provided an overview of the FDA Cancer Liaison Program, which seeks to involve patients in the design of clinical trials and the drug approval process. Ms. Delaney’s remarks included the need to have all pharmaceutical clinical trials registered with the agency so the public will have access to trial information. Dr. Michael Bishop, Director of Experimental Transplantation at the National Cancer Institute, gave an in-depth presentation on the latest scientific advances in gene therapy. His presentation was both personal and academic, with his compassion for patients evident in his presentation about scientific research as well as the pioneering spirit of patients who participate in clinical trials. Peter Teeley, Senior Vice President of Government Affairs for the biotechnology firm AMGEN, presented a candid and frequently humorous account of his struggle with cancer. Following his address, he signed copies of The Complete Cancer Guide, his informative and useful book that is a must-read for patients with cancer and their families. Ruben King-Shaw, Deputy Administrator of the Centers for Medicare and Medicaid Services, discussed the myriad public programs under the agency’s jurisdiction and how advocacy can help shape public policy. Patient Congress III concluded with a moving and inspirational address by 12-year-old cancer patient Jarrett Mynear, the founder of Jarrett’s Joy Cart, a program to provide toys to patients at the University of Kentucky Children’s Hospital.

Participants of Patient Congress III left with a sense of accomplishment, a determination to stay involved with the political process, and a first-hand understanding of how advocacy plays a vital role in the mission of NPAF to serve patients across America. Attendees from 23 states made their voices heard and left the conference with a sense that, “I can make a difference,” as was reflected overwhelmingly in their conference evaluations.

Plans are already underway for Patient Congress IV, which will take place January 29-31, 2003 at the Washington Court Hotel in Washington, D.C. Mark your calendars now to be a part of this exciting and informative event.•