Advocating for the Breast Cancer Deadline!

About three weeks ago, several of us at Side-Out attended The National Breast Cancer Coalition’s (NBCC) Annual Advocacy Training Conference in Washington, DC (Saturday, April 30th through Tuesday, May 3rd). If you haven’t heard about it yet, NBCC set a deadline for the end of breast cancer. In a document explaining the deadline, the organization writes “Our understanding of breast cancer has increased dramatically, but for people facing breast cancer, very little has changed…more of the same will not end breast cancer” (Breast Cancer Deadline: Why Now?). When is the deadline? January 2020.

What most impressed us about the conference was the level of knowledge each attendee had. Many were breast cancer survivors, some were health care professionals, some were students interested in advocacy and health care and all were breast cancer advocates. Each group contributed an essential viewpoint to the goal of the conference: “Changing the Conversation”.

We have learned an incredible amount about breast cancer through our work at Side-Out. We realized that pink is controversial and the word “survivor” is subjective. We discovered that metastatic breast cancer has no cure and the research conducted on this stage of the disease is minimal. We also came to understand the devastation of the disease when Gloria Dunetz died after living with metastatic breast cancer for six years.

Because of all this newfound knowledge, we felt a bit star-struck when we saw the NBCC conference speaking lineup: Sharon Begley, Dr. Susan Love, Musa Mayer, Joy Simha, Dr. Dennis Slamon, Dr. Patricia Steeg and of course Fran Visco (among many other highly respected individuals). The various plenary sessions and workshops were informative, thought-provoking and overwhelming (only in the sense that our brains were exhausted by the end!).

Aside from the 2020 deadline, the recurring theme throughout the conference was, as a speaker said in the First-time Attendee Orientation, “we’re not here for our disease…we’re here for the next generation”. So many of Side-Out’s ideals seemed in line with what NBCC espouses. Throughout the conference, Rick Dunetz (Side-Out’s founder and executive director) kept nudging me with his elbow and nodding his head, excited about the parallels of thought between Side-Out and presenters at the conference. Speakers and panelists discussed what changes need to be made to reach the deadline, changes that Rick and his dad, Bryant, have discussed many times. Some of the main ones were:

• Re-evaluate research incentives (should researchers really have to choose their research based on what is most likely to get published and what may earn them tenure?)
• Share information (it seems intuitive that sharing theories and discoveries (both failed and successful) will be what leads to scientific breakthroughs) – “There is no limit to the good a man can do, if he doesn’t care who gets the credit.”, Benjamin Jowett
• Focus on the effectiveness of drugs (even when a drug doesn’t show much promise, if it’s in the works in a drug company, that company will most likely put it through)
• Direct the research (“We have to change the culture of science-it’s not about the amount of money…we need to direct the research.”, Dr. Susan Love)

Because Side-Out’s mission involves educating and motivating the next generation, we were especially interested in learning how students can get involved with breast cancer advocacy. We have been working with Kathryn Johnson (NBCC Field Organization Manager) in efforts to create a program for students participating in our events. This partnership will allow participants the opportunity to apply for internships and to bring advocacy to their school campuses.

Kathryn heads NBCC’s Emerging Leaders program, the section of the organization devoted to training young adults in the art of advocacy. The first day of the conference, Nila and I attended the Emerging Leaders Meet-up, and we were thrilled to see a roomful of students from various parts of the US (and one from China!). Many of them were from Western Oregon University as part of a very popular course in public health issues related to breast cancer. WOU professor Jessica Henderson created an internship several years ago, the inspiration behind the college initiative portion of the Emerging Leaders program. Her students have been participating in the conference for seven years.

Each student in the room exuded passion and knowledge, and it was impossible not to feel encouraged simply by being in their presence. Side-Out constituents would make for an incredible addition to the group, and we look forward to introducing advocacy education to all of you who are interested in becoming involved. I am sure you will feel just as we did when we left the conference: empowered, excited and proud to be part of a movement to challenge the status quo.