BY ERIC T. ROSENTHAL, Special Correspondent
A small but significant historical moment took place during the Survivorship Educational Session on the first day of this year’s 35th Annual San Antonio Breast Cancer Symposium (SABCS) when the moderator of the “Navigating the Obstacles and Risks of Survivorship” panel announced that she was the first survivor/advocate to lead a session at the symposium, in effect joining the meeting’s faculty ranks as a layperson.
The moderator was Susan W. Rafte, Survivor Founder of Pink Ribbons Project in Houston, and her panelists were:
- Michael Krychman, MD, Southern California Center for Sexual Health and Survivorship, discussing “Emerging Sexual Pharmacology for the Breast Cancer Survivor”;
- Patricia A. Ganz, MD, UCLA, talking about “Cognitive Changes and Breast Cancer Treatments”; and
- Leslie Bernstein, PhD, City of Hope, substituting for Jonine L. Bernstein, PhD, Memorial Sloan-Kettering Cancer Center, who was unable to attend for her talk on the “Risk of Second Primary Breast Cancer Among Survivors of Breast Cancer.”
The following day I asked Ganz, Professor of Health Services in the School of Public Health, Professor of Medicine in the David Geffen School of Medicine at UCLA and Director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center, about this “first.” She said that she hadn’t really focused on the moderator’s background when she was initially contacted about participating, but said that in retrospect, “yes, this was a big milestone for advocates: Their perspective is very important and what we should want is a normalization of all stakeholders interested in the problem [of breast cancer].”
She acknowledged that the advocates at this meeting and others are the descendants of Rose Kushner’s pioneering efforts dating from the 1970s, and the long history of advocates and survivors dedicated to pushing for what was needed, including the role of advocates in the National Breast Cancer Coalition’s Project LEAD (Leadership, Education and Advocacy Development), and those serving as grant reviewers in the U.S. Department of Defense (DoD) Breast Cancer Research Program.
There is a synergy between patients and the medical community and while patients seek information from the researchers who have created a body of knowledge, medical professionals need to learn more from patients about living with cancer day to day, she said.
Perhaps it’s not surprising that breast cancer advocates who birthed the entire cancer advocacy movement sought to be involved in the world’s premier scientific breast cancer meeting.
For the past 15 years the San Antonio-based Alamo Breast Cancer Foundation (ABCF – OT, 2/25/05) has held “Hot Topic Mentor Sessions” for three consecutive evenings at SABCS that provide advocates with panel discussions by leading breast cancer experts highlighting the most compelling presentations of each day.
Alamo President Sandi Stanford and Past-President Joy Moose explained that since 1998 Alamo has offered 528 scholarships for its Patient Advocate Program to attend SABCS with the expectation that recipients participate in activities at the meeting, write up an account of some aspect of the research, and disseminate information learned to their communities, constituents, or organizations. They are also encouraged to share their experiences with local media and ask doctors back home why they weren’t there to keep up with cutting-edge therapies.
This year 31 advocates from around the world benefited from the scholarship, and Moose said that she is encouraged and takes pride that so many of the program’s past alumni have continued to attend subsequent symposia at their own expense.
She recalled that she and another survivor/advocate, Dale Eastman, had started sitting in on sessions as early as 1996 and that after two years of “crashing the meeting,” they were invited to a dinner by then symposium Co-Director Charles A. Coltman Jr., MD, who said “you ladies have been coming, do you want to make it legal?”
“Dr. Coltman gave us a budget and a list of potential donors and we raised the funds,” Moose said, noting that the education program has expanded even more since the American Association for Cancer Research came aboard five years ago (OT, 1/25/08).
Margaret Foti, PhD, CEO of AACR, which partners in sponsoring the symposium with the Cancer Therapy & Research Center (CTRC) at the University of Texas Health Science Center at San Antonio and Baylor College of Medicine, said, “It’s incredibly important to have stronger relationships with patient advocates, who have a very unique and personal perspective. A lot of patients go through things that we as professionals are unaware of…and a mutual understanding is very important.”
AACR has had a long history of involving patient advocates in its annual meeting as well as some of its specialty meetings. Although other organizations such as ASCO have had survivorship or patient advocacy committees, AACR became the first professional cancer society to open a staffed office dedicated to survivorship and patient advocacy in 1999, and the programs have served to benefit both scientists and advocates.
Since then AACR has held a “Scientist↔Survivor” Program at its annual meeting, which brings together about 20 scientists with 30 to 35 patient advocates representing organizations involved with cancer, and many relationships between scientists and survivors have lasted years beyond the meetings (OT, 7/25/05).
“Advocates would leave the meetings with a good sense of the importance of basic science as the pipeline to the clinic, and [in the past] many scientists didn’t even think about how their science could be extrapolated to patient care, “ Foti said. “At San Antonio, Alamo’s program was already in place, but we suggested adding special sessions dealing with scientific education related to new areas.”
C. Kent Osborne, MD, Professor of Medicine and Molecular and Cellular Biology, Director of the Dan L. Duncan Cancer Center, and Director of the Breast Center, all at Baylor College of Medicine, is one of the three SABCS Co-Directors – the others are Peter M. Ravdin, MD, PhD, Ruth McLean Bowman Bowers Chair for Breast Cancer Research and Treatment, and Director of the Breast Cancer Program at UT Health Sciences Center San Antonio; and Carlos L. Arteaga, MD, Director of the Breast Cancer Program at Vanderbilt-Ingram Cancer Center.
Osborne noted that early on there had been the realization that this was a team effort and that patient advocates were an important part of the education and awareness process and their perspective was needed in understanding the disease better.
He said that in the past the symposium had held educational sessions of interest to survivors and advocates, and in 2004, patient advocate Amy Langer, then-Executive Director of the National Alliance of Breast Cancer Organizations (NABCO, which closed that same year), had presented the William L. McGuire Memorial Lecture (OT, 1/25/05).
“We always saw advocates as an important ingredient, and Susan’s role as moderator happened spontaneously and was a perfect fit,” he said, adding that Rafte was a patient advocate member of both Baylor’s Breast Cancer SPORE (NCI's Specialized Programs of Research Excellence) and the SABCS’s planning committee.
He said that advocates have been part of the case discussions held at noon at SABCS, and that in the distant past some doctors may have been uncomfortable with patient involvement in medical or scientific forums. But through the years, “most of us have learned their value as team members, and if there’s a role we’ll include them.”
Rafte, who was diagnosed with stage III breast cancer 18 years ago at age 30, shortly after giving birth to her daughter, said that she always wanted to give something back. Her sister, Jane Weiner, a New York-based dancer at the time, cofounded Pink Ribbons Project with some of her dancer friends to raise money for breast cancer in Rafte’s honor, and a few years later, after Rafte underwent an autologous stem cell transplant for metastatic disease, the organization was moved to Houston.
Since then she has been deeply involved in the cancer community, as volunteer Executive Director and now Founding Survivor of Pink Ribbons Project, with the Baylor SPORE and SABCS planning committee, as an advocate member of the Translational Breast Cancer Research Consortium, as Chair of the Breast Health Collaborative of Texas, and as a volunteer and patient advocate at both MD Anderson Cancer Center and Baylor’s Lester and Sue Smith Breast Center.
She also received the 2002 Shining Star Award from the American Cancer Society and the 2004 Carpe Diem Spirit of Survivorship Award from the Lance Armstrong Foundation.
Rafte said that she and Alamo’s Sandi Stanford, the other patient advocate on SABCS’s planning committee, had suggested topics related to survivorship for an educational session of interest to breast cancer survivors, and it eventually became “Navigating the Obstacles and Risks of Survivorship.” “During the planning meeting I was just asked to organize it [without recognizing the significance at the time], and a few months later Eric Winer mentioned that I was the first survivor or advocate to moderate a session at San Antonio,” she said.
Among the other survivors who have been meeting regulars for years are Carolyn L. Charkey, an After Breast Cancer Diagnosis (ABCD) volunteer and former Y-ME staff hotline peer counselor. She agreed that the San Antonio meeting has been a great venue for advocates but also mentioned the strides that advocates have made in equality with researchers over the years from her experience as a DoD breast cancer grant panel reviewer.
“Advocates have had an equal seat at the table [at DoD] for years, with our voice having the same weight as the scientific and clinical reviewers who now want to hear from us about how proposals are going to affect patients in their lifetimes.
“Our input is listened to and taken seriously.”