The Patient Voice Resounds at International Conference

Guest post by Advocate in Science, Karen Durham. 

In January of 2012, as I participated in the Susan G. Komen Metastatic Roundtable, I never imagined the experience would lead me halfway around the world. The findings of the Roundtable and Komen’s sustained drive to improve the lives of those living with metastatic breast cancer (MBC) led to a unique opportunity for me to present our work at the Second International Consensus Conference for Advanced Breast Cancer (ABC2) held in Lisbon, Portugal, earlier this month.

The purpose of the meeting was to bring leading medical professionals and patient advocates from around the world to build on a 2011 Consensus Conference in developing a set of guidelines for the management of advanced breast cancer (MBC) in diverse health care settings globally. There were over 1,000 attendees from 71 countries at ABC2. This included 68 patient advocates, many of whom received travel grants funded by Komen.

The conference was chaired by four of the leading researchers in the field, including Komen’s Chief Scientific Advisor, Dr. Eric Winer. The 40-member consensus panel consisted of researchers and oncologists including Komen’s Chief Scientific Advisor Dr. George Sledge and five Komen Scholars, as well as several patient advocate members.

Dr. Kimberly Sabelko, Managing Director of Komen’s Strategic Programs and Partnerships, served on the Breast Cancer Advocacy Committee. This group oversaw the Breast Cancer Patient Advocacy Program that helped to integrate the patient perspective into the scientific dialogue and brought the patient’s voice front and center. During this program, representatives from advocate groups around the world (including several who are also part of the Metastatic Breast Cancer Alliance with Komen) discussed challenges faced, and identified some common priorities for women with MBC regardless of where in the world they live. On the last day, the findings of the advocate groups were shared with all ABC2 attendees.

Observing the consensus panel on Nov. 9 was fascinating because this is when they voted on the proposed guidelines which are recommendations for treatment, based on levels of evidence from clinical trials. First, Dr. Winer read each proposed guideline. The guideline was briefly discussed by the panel—sometimes very spiritedly—and the panel voted immediately following the discussion.

Some of the major findings of ABC2 reflect the information patient advocates shared about survivorship and the doctor-patient relationship. Doctors agreed that patients should be informed, that psycho-social care needs to be integral in every patient’s case, and that maintaining the best possible quality of life for as long as possible must be part of every treatment plan. I was surprised to learn that not all breast cancers were included in the ABC1 conference. ABC2 added guidelines regarding inflammatory and locally advanced breast cancers.

The experience was exhilarating. I enjoyed presenting my poster on Susan G. Komen’s Investment in Metastatic Breast Cancer. However, the most exciting moment for me was when Dr. Larry Norton, a breast cancer expert at Memorial Sloan Kettering Cancer Center told the advocates that, “We may already know how to cure metastatic breast cancer but we just don’t know it yet. All the dots need to be connected, and we aren’t sure of the order of connection.”

About the author

Susan G. Komen has written 342 articles for Susan G. Komen® | Blog

Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen and launched the global breast cancer movement. Today, Komen is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure®, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.