Elizabeth Edwards’ Death Drives Advocates at SABCS

There is a sense of urgency among the 36 patient advocates gathered in a hotel meeting room before the beginning of the San Antonio Breast Cancer Symposium. Having just arrived, most are hearing for the first time about the death of Elizabeth Edwards from metastatic breast cancer.

Little is said about Edwards as the women introduce themselves, each beginning with her number of years of survivorship and some adding details, such as HER2 status and whether she is triple negative or metastatic. Then they tell of their affiliations back home where they work on research, education or policy at the community, state or national level: SHARE, Susan G. Komen for the Cure, the National Breast Cancer Coalition, Y-ME, Young Survival Coalition, Gilda’s Club and others, as well as national organizations in Nigeria, New Zealand, Japan, Australia, Egypt and Scotland.

They have come to learn all they can to return home and effect change. Edwards’ death is an unneeded exclamation point about the importance of their mission.

The women have come on scholarship from the Alamo Breast Cancer Foundation, which for 12 years has brought patient advocates to SABCS. The program began when Charles Coltman Jr., MD, a co-founder of the symposium, approached breast cancer survivors Joy Moose and Dale Eastman about creating an advocacy program for the symposium. Coltman was well acquainted with the two women, who had begun attending the physician-only symposium to educate themselves on breast cancer research. When more advocates began appearing, he asked them to formalize an advocacy program for survivors.

“We said, ‘Yes,’ ” says Moose. “Then we got out in the hall, hugged, and said, ‘So how do we do this?’ ”

There were nine survivors in the first “class.” Today, the advocates come from 13 states and six foreign countries, their attendance covered by grants totaling more than $313,500. To date, 367 advocates have completed the program.

For the next four days, these women, all breast cancer survivors, will be listening to presentations on the latest research, with each assigned one session to write up for the educational CD that will be created for distribution across the country in early 2011. “We only take women who have already been through Project Lead,” Eastman says, referring to the intense basic science program offered by the National Breast Cancer Coalition that prepares advocates to sit on advisory and evaluative panels and boards, such as the Department of Defense Peer Reviewed Board. The advocates agree to attend a Project Lead advanced topics session, write a “hot topic” and work with mentors to help clarify their topic.

Every day has additional discussion and education sessions, meaning the woman are busy from morning to night. And even then, they often huddle in groups to share information on the latest advocacy accomplishments. No one has to remind them of the importance of their work here.

New to the program is the scholar program to address the growing number of physicians applying for scholarships, many from foreign countries. Eastman says many of these physicians are creating advocacy programs, and the foundation wanted to support this effort. This year’s scholar, Mohamed Shaalan, MD, one of the top breast surgeons in Egypt, is a founder of the Breast Cancer Foundation of Egypt, which held its second Race for Hope and Cure from Breast Cancer (their version of the Race for the Cure) in 2010 against a backdrop of pink pyramids.

The ABCF has also been gratified to see the results of their program as women have gone on to become powerful voices for breast cancer research, education and advocacy. Some have taken full-time jobs based on their work, and both Germany and Australia now have created similar programs after sending an advocate.

At the end of orientation, the women gather their materials and head to dinner and the only early evening of their stay.

Watch for profiles on ABCF advocates over the next four days of CURE’s SABCS coverage.

You can view a video interview with Dale Eastman from CURE’s 2009 coverage of SABCS here.