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CATEGORIES [ SABCS2012, BREAST CANCER ]

Breast cancer advocates a visible presence in San Antonio

BY KATHY LATOUR | DECEMBER 3, 2012

This year's Alamo Breast Cancer Foundation (ABCF) advocates come from across the US and around the world. For the next week, the advocates, 30 women and one man, will attend the sessions of the San Antonio Breast Cancer Symposium (SABCS), the largest international gathering of clinicians and researchers that is held annually in San Antonio the first week of December.

Each of the advocates, the vast majority of whom are breast cancer survivors, represents one or more organizations where they work one or more aspects of breast cancer.

The ABCF, an all-volunteer organization that is funded through local events and individual donations, provides local outreach, runs a helpline, and represents the needs of women in the halls of the Texas legislature where they have spearheaded legislation to provide protection from discrimination due to genetic information; to cover breast reconstruction after mastectomy; to cover two days in the hospital after mastectomy surgery and to require that insurers cover costs associated with federally approved clinical trials.

But being located in the home of SABCS, the foundation has also created a unique program that educates breast cancer advocates so they might take the latest information back to their home groups and serve on national funding boards.

Sandi Stanford, president of the board of the foundation and chair of the advocate committee, says in the past 15 years that the advocate program has been in operation, more than 500 advocates have come from 41 states and 11 foreign countries.

Each advocate is assigned a specific portion of the presentation as his or her "hot topic," and a CD is created at the end of the symposium on which all advocate reports are compiled. After attending the scientific presentations, advocates go to a mentoring session at day's end when a panel of expert clinician researchers report on the most valuable or intriguing part of the day's research. Advocates can question findings and talk one on one with researchers.

Some may question why it's so important to have advocates at a meeting where the presentations are clearly for those who have a medical degree – in other words the material is hard to understand.

I think that was the attitude of many of the doctors and researchers in the early years when advocates were present, until they heard the questions coming from women who had clearly researched the topic with a vengeance brought on by a will to live.

Now, physicians see the role of the advocates as important, because as one oncologist pointed out, they ask thoughtful questions following oral presentations that would not have been aired by professional attendees. This helps clinicians and scientists see their work from the patient view while building trust and confidence on both sides.

This year SABCS advocates will be asking questions, challenging assumptions and asking for more focus on the areas close to their hearts – which for some is metastatic breast cancer.

You will be hearing from a number of the advocates and the topics they are covering in these blogs. Follow them, and ask questions to be answered in the Thursday Facebook chat. Also, consider becoming an advocate next year.

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